FairyMagick
11-13-2005, 03:01 AM
Hello, how is Andenomyosis dignoised? If anyone has any info on Andenomyosis, I would much apperciate it. I have Endo and suspect Andenomyosis also. But I have no info about it. Such as treatment etc.
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tweets15
11-13-2005, 05:26 PM
Hey Fairymagick,
I had a myomectomy in August (a couple months after yours) and my doctor told me that the lab reports said that I had some adenomyosis attached to the fibroids that they checked for cancer.
I am pretty sure I read somewhere on the internet that the only way that they can detect for sure that it is adenomyosis is by removal and looking at the tissue under a microscope. Maybe you could call your doctor and ask if there was any sign of adenomyosis in the samples of the fibroids they checked. Thats how I found out I had that also. I never had any pain or anything. What are your symptoms that make you believe you have it?
Tweets
I had a myomectomy in August (a couple months after yours) and my doctor told me that the lab reports said that I had some adenomyosis attached to the fibroids that they checked for cancer.
I am pretty sure I read somewhere on the internet that the only way that they can detect for sure that it is adenomyosis is by removal and looking at the tissue under a microscope. Maybe you could call your doctor and ask if there was any sign of adenomyosis in the samples of the fibroids they checked. Thats how I found out I had that also. I never had any pain or anything. What are your symptoms that make you believe you have it?
Tweets
djl
11-13-2005, 08:16 PM
Hi fairymagic
I had Adenomyosis. I also had a hyst due to the adenomyosis and other things.
About 9 years ago I had an MRI due to back pain. They did find a herniated disc, but my back doctor was more concerned over the fact that it showed my Uteris was enlarged with a possible mass. I have read recently that if an MRI show this it is possibly determined to be Adenomyosis.
You can also have a Lap done to check the Uteris. I had one done with a D&C and it showed Enlarged Uteris that was Boggey, amongst other problems they found. An Enlarged boggey uteris is also a possiblity of Adenomyosis or Fibroids.
they only way to TRULY dx Adenomyosis, is to have the Uteris removed and sent to pathology.
I had a hyst on May 9th 2005. They took everything out but my Cervix. My doc said after my surgery that my Uteris was a mess. It looked like it went through 2 or 3 C-Sections. I NEVER had a C-Section. He also said it was HUGE !!!!!!!!! Since it was so big and damaged he knew what Pathology would come back with. Pathology did test it positive Adenomyosis.
Adenomyosis is one of the MOST damiging diseases of the Uteris. It is VERY painful. It is also called Internal Endometriosis. It works the same way. The problem with Adenomyosis is that it is deep inside the Uteris and much harder to control. At least with Endo you can have a Lap done and hopefuly have the Endo removed. You cant when you hane Adeno.
You treat it pretty much as Endo. You can try the BC Pill, you can also try Lupron. You will most deffinately end up having to take a Anti-Inflamitory or pain killer for the menstral pain. Adeno cause severe menstral pain. And as like Endo it can go all month if it is real bad.
My simptoms were:
Since the age 13:
Severe painful periods (doubling over pain and in bed for almost 3 days in pain)
Heavy Bleeding
Clotting
Nausea and Vomiting during period at times also I would be very pale
back and leg pain during period
I don't know if this part has anything to due with Adeno but :
From the time I was 22:
I still suffered from all of the above and then
developed severe ovulation pain
sometime during the ovulation pain my stomache would swell so much I looked pregnant.
I am 39 years old now and when I had my lap they found:
Enlarged Boggey Uteris
Adesions
Rupttured Ovarian Cysts
Severe Pelvic Congestion
Regarding the Ovarian Cysts...that goes hand in hand with my severe ovulation pain that I used to have. They think I was popping cysts left to right during that time.
I continued doing this along with the Adenomyosis until I had my Hyst.
Adenomyosis can be difficult to deal with and also to DX.
I would deffinately talk to your doc about options.
Good Luck
and any questions please ask !!
I had Adenomyosis. I also had a hyst due to the adenomyosis and other things.
About 9 years ago I had an MRI due to back pain. They did find a herniated disc, but my back doctor was more concerned over the fact that it showed my Uteris was enlarged with a possible mass. I have read recently that if an MRI show this it is possibly determined to be Adenomyosis.
You can also have a Lap done to check the Uteris. I had one done with a D&C and it showed Enlarged Uteris that was Boggey, amongst other problems they found. An Enlarged boggey uteris is also a possiblity of Adenomyosis or Fibroids.
they only way to TRULY dx Adenomyosis, is to have the Uteris removed and sent to pathology.
I had a hyst on May 9th 2005. They took everything out but my Cervix. My doc said after my surgery that my Uteris was a mess. It looked like it went through 2 or 3 C-Sections. I NEVER had a C-Section. He also said it was HUGE !!!!!!!!! Since it was so big and damaged he knew what Pathology would come back with. Pathology did test it positive Adenomyosis.
Adenomyosis is one of the MOST damiging diseases of the Uteris. It is VERY painful. It is also called Internal Endometriosis. It works the same way. The problem with Adenomyosis is that it is deep inside the Uteris and much harder to control. At least with Endo you can have a Lap done and hopefuly have the Endo removed. You cant when you hane Adeno.
You treat it pretty much as Endo. You can try the BC Pill, you can also try Lupron. You will most deffinately end up having to take a Anti-Inflamitory or pain killer for the menstral pain. Adeno cause severe menstral pain. And as like Endo it can go all month if it is real bad.
My simptoms were:
Since the age 13:
Severe painful periods (doubling over pain and in bed for almost 3 days in pain)
Heavy Bleeding
Clotting
Nausea and Vomiting during period at times also I would be very pale
back and leg pain during period
I don't know if this part has anything to due with Adeno but :
From the time I was 22:
I still suffered from all of the above and then
developed severe ovulation pain
sometime during the ovulation pain my stomache would swell so much I looked pregnant.
I am 39 years old now and when I had my lap they found:
Enlarged Boggey Uteris
Adesions
Rupttured Ovarian Cysts
Severe Pelvic Congestion
Regarding the Ovarian Cysts...that goes hand in hand with my severe ovulation pain that I used to have. They think I was popping cysts left to right during that time.
I continued doing this along with the Adenomyosis until I had my Hyst.
Adenomyosis can be difficult to deal with and also to DX.
I would deffinately talk to your doc about options.
Good Luck
and any questions please ask !!
FairyMagick
11-14-2005, 01:23 AM
Hi Ladies,
Tweets I remember you from before :) My symptoms are pain almost every day of the month. If I am lucky I get a few days with little to no pain. The pain ranges from moderate to serve. I feel tried all the time. My back hurts some of the time. I also get ovulation pain and leg pain, all of this even after the Lap and myocetomy.
My doctor seems to think the surgeries I had should have cured the pain. He removed a large fibroid, some cysts and lazered the Endo.
One of the worst pains I get seems to come from my uterus. That's why I think because I have no pain relief after the surgeries, I may have Andenomyosis. Funny thing is I remember right after my surgery on a follow up apt, I saw my chart and it looked like it said Andenomyosis. I was thinking hey they miss spelled Endo. Crazy I know, but I didn't think much of it at the time, and I'm not sure if what I saw was something else. My doctor seemed to be carrying and competent. And after the surgeries he boosted to my mother and boyfriend I shouldn't have anymore problems and if anything was going to grow back it would take 20 years. He also told me whilst I was in hospital I could start ttc after 4 weeks, and told me I would have no troubles getting pregnant. I have read other wise. But now He takes a lacks attitude with giving me pain management and meds. I have starting to consider having my uterus removed and questioned him about this. And he said it wouldn't necessary help me. I haven't had any children yet. But the pain I have is starting to take a toll on me and I need something done. Even If I can get pregnant I would be left with this pain after the baby is born. I would need something done then too. And tcc isn't so easy when I have pain!
Thank you guys for responding to my post sorry its so long. Djl how have you been sense your hyst? Has any of your pain returned? I guess I should call the office and ask about the Andenomyosis but I hate calling there now I always feel depressed after calling.
Tweets I remember you from before :) My symptoms are pain almost every day of the month. If I am lucky I get a few days with little to no pain. The pain ranges from moderate to serve. I feel tried all the time. My back hurts some of the time. I also get ovulation pain and leg pain, all of this even after the Lap and myocetomy.
My doctor seems to think the surgeries I had should have cured the pain. He removed a large fibroid, some cysts and lazered the Endo.
One of the worst pains I get seems to come from my uterus. That's why I think because I have no pain relief after the surgeries, I may have Andenomyosis. Funny thing is I remember right after my surgery on a follow up apt, I saw my chart and it looked like it said Andenomyosis. I was thinking hey they miss spelled Endo. Crazy I know, but I didn't think much of it at the time, and I'm not sure if what I saw was something else. My doctor seemed to be carrying and competent. And after the surgeries he boosted to my mother and boyfriend I shouldn't have anymore problems and if anything was going to grow back it would take 20 years. He also told me whilst I was in hospital I could start ttc after 4 weeks, and told me I would have no troubles getting pregnant. I have read other wise. But now He takes a lacks attitude with giving me pain management and meds. I have starting to consider having my uterus removed and questioned him about this. And he said it wouldn't necessary help me. I haven't had any children yet. But the pain I have is starting to take a toll on me and I need something done. Even If I can get pregnant I would be left with this pain after the baby is born. I would need something done then too. And tcc isn't so easy when I have pain!
Thank you guys for responding to my post sorry its so long. Djl how have you been sense your hyst? Has any of your pain returned? I guess I should call the office and ask about the Andenomyosis but I hate calling there now I always feel depressed after calling.
djl
11-14-2005, 02:16 PM
Hi Farymagic
I had my hyst 6 months ago, and NO the pain has not returned !! Thank God !!
Of coarse I am dealing with hot fkashes and night sweats. I am on HRT. My GP thinks I am also dealing with Anxiety Attacks caused by the Menopause so I do have to see my OB again on the 29th. I don't think the HRT is working good enough for me. It is probably not strong enough.
I had my hyst 6 months ago, and NO the pain has not returned !! Thank God !!
Of coarse I am dealing with hot fkashes and night sweats. I am on HRT. My GP thinks I am also dealing with Anxiety Attacks caused by the Menopause so I do have to see my OB again on the 29th. I don't think the HRT is working good enough for me. It is probably not strong enough.
FairyMagick
11-15-2005, 01:01 AM
Djl, I'm so happy for you that your pain has not returned. Hopefully you will get your meds to work better for you. I have heard it can take a while to get them just right. Do you have any idea why my doctor would tell me having my uterus removed wouldn't help me?
tweets15
11-15-2005, 08:22 AM
Fairymagick,
I am soo sorry to hear that you are still having pain after your surgeries. Were you ever pain free after either of your surgeries? I was wondering if the endo can grow back that fast since you had your second surgery this summer, you would think it wouldn't come back that fast. I only have pain if I lift something heavy and its more of a muscle pain. But I never had any pain to start with and you did. We used to have a pain management doctor here in our town. He just dealt with people with chronic pain in various parts of their bodies. He was a doctor who could prescribe drugs and other tests to see how to get rid of chronic pain, He also diagnosed diseases for the physicians here in town so they could help the paitent with treatments.
I also read on these boards that somebody alway got a copy of their medical records. It was a law that the clinics had to give you a copy and only charge you a minimal charge for it. One clinic I went to they were free and the one I go to now is like 10 cents a page. Cheap enough to see whats going on. I got the medical records from my clinic and my hospital stay for my myomectomy and found them interesting to read. Also there were no surprises, I was told about everything that I had read in them which was nice to know that I am going to a good clinic. Maybe you could find a pain management specialist in your area and request your records and take them in to the specialist and go over them with him. Just even get a second opinion with another ob/gyn as as second set of eyes and ears can only be a good thing. He/she might see something or know of a new procedure to help you.
I also think that I read that having your uterus removed might not work because endo can be everywhere. Around your ovaries, falopian tubes and even around your intestines and bladder. So having your uterus removed might not help. It could also be scar tissue giving you pain. I had read about adhesions before my surgery and that was my only concern with the myomectomy. There is an adhesion barrier that they put over the internal stitches that covers them up so that they dont heal onto other parts of your insides and that could cause pain also.
I think I would have been alittle apprehensive about having a baby sooo soon after the surgery. What did your doctor say? Wait a month and try to conceive? Things are still healing and stuff. I dont think that would have been very healthy for your uterus to go through a pregnancy soo soon.
Well, I really hope you find answers to your problems. You have been through so much, (I know cuz I have had a myomecotmy also and it wasn't no picnic) that you deserve to be pregnant by now or at least pain free! Good luck and keep us all posted!
Tweets
I am soo sorry to hear that you are still having pain after your surgeries. Were you ever pain free after either of your surgeries? I was wondering if the endo can grow back that fast since you had your second surgery this summer, you would think it wouldn't come back that fast. I only have pain if I lift something heavy and its more of a muscle pain. But I never had any pain to start with and you did. We used to have a pain management doctor here in our town. He just dealt with people with chronic pain in various parts of their bodies. He was a doctor who could prescribe drugs and other tests to see how to get rid of chronic pain, He also diagnosed diseases for the physicians here in town so they could help the paitent with treatments.
I also read on these boards that somebody alway got a copy of their medical records. It was a law that the clinics had to give you a copy and only charge you a minimal charge for it. One clinic I went to they were free and the one I go to now is like 10 cents a page. Cheap enough to see whats going on. I got the medical records from my clinic and my hospital stay for my myomectomy and found them interesting to read. Also there were no surprises, I was told about everything that I had read in them which was nice to know that I am going to a good clinic. Maybe you could find a pain management specialist in your area and request your records and take them in to the specialist and go over them with him. Just even get a second opinion with another ob/gyn as as second set of eyes and ears can only be a good thing. He/she might see something or know of a new procedure to help you.
I also think that I read that having your uterus removed might not work because endo can be everywhere. Around your ovaries, falopian tubes and even around your intestines and bladder. So having your uterus removed might not help. It could also be scar tissue giving you pain. I had read about adhesions before my surgery and that was my only concern with the myomectomy. There is an adhesion barrier that they put over the internal stitches that covers them up so that they dont heal onto other parts of your insides and that could cause pain also.
I think I would have been alittle apprehensive about having a baby sooo soon after the surgery. What did your doctor say? Wait a month and try to conceive? Things are still healing and stuff. I dont think that would have been very healthy for your uterus to go through a pregnancy soo soon.
Well, I really hope you find answers to your problems. You have been through so much, (I know cuz I have had a myomecotmy also and it wasn't no picnic) that you deserve to be pregnant by now or at least pain free! Good luck and keep us all posted!
Tweets
djl
11-15-2005, 04:56 PM
Fairymagic,
from what I understand but I find not always true, that if it is Endo, supossedly a hyst wont help. The Endo grws back. But I do have a friend that had Endo and a severe case of it it was all over her inside. She had a hyst a few years back and has been perfectly fine !! If it is Adeno (internal Endo) the only way to get rid off it is to remove the Uteris. But then stil have to worry about HRT. My doc told me that even though it was Adeno and he didn't realy see any Endo he did say that the HRT may cause me too develop Endo so if I o start getting any pain to let him know.
from what I understand but I find not always true, that if it is Endo, supossedly a hyst wont help. The Endo grws back. But I do have a friend that had Endo and a severe case of it it was all over her inside. She had a hyst a few years back and has been perfectly fine !! If it is Adeno (internal Endo) the only way to get rid off it is to remove the Uteris. But then stil have to worry about HRT. My doc told me that even though it was Adeno and he didn't realy see any Endo he did say that the HRT may cause me too develop Endo so if I o start getting any pain to let him know.
VirgoGal
11-21-2005, 01:55 PM
Hi guys,
I'm new to the boards. I'm 35 and I just had a lap for DX of endo, but my doctor said it was Adenomyosis, tho she did laser scar tissue and had to repair 3 spots where my sm intestines had grown attached to my right pelvic wall. I hadn't heard of Adenomyosis before so I was a bit surprised, but she said my uterus was enlarged and "boggy." Also, she wants to start me on Lupron Depot with add-back therapy. I've learned that I will be in temporary menopause with severe mood swings, hot flashes, night sweats, bone loss, hair and skin changes, vaginal dryness, loss of sex drive, loss of periods and memory loss for the 6 month time frame. This scares me a lot. I'm worried how my 15 year old son will be affected by my changes as well as my boyfriend. He's wonderful about all of this and wants me to do the therapy, but there is only so much a relationship can stand and I'm worried about making him run for the hills! He's making a 1600 mile move across country to be with me and I'm seriously worried. I know the only other cure for this is a hysterectomy which is menopause for real. {REMOVED}
I'm new to the boards. I'm 35 and I just had a lap for DX of endo, but my doctor said it was Adenomyosis, tho she did laser scar tissue and had to repair 3 spots where my sm intestines had grown attached to my right pelvic wall. I hadn't heard of Adenomyosis before so I was a bit surprised, but she said my uterus was enlarged and "boggy." Also, she wants to start me on Lupron Depot with add-back therapy. I've learned that I will be in temporary menopause with severe mood swings, hot flashes, night sweats, bone loss, hair and skin changes, vaginal dryness, loss of sex drive, loss of periods and memory loss for the 6 month time frame. This scares me a lot. I'm worried how my 15 year old son will be affected by my changes as well as my boyfriend. He's wonderful about all of this and wants me to do the therapy, but there is only so much a relationship can stand and I'm worried about making him run for the hills! He's making a 1600 mile move across country to be with me and I'm seriously worried. I know the only other cure for this is a hysterectomy which is menopause for real. {REMOVED}
tweets15
11-23-2005, 11:28 PM
Hello, how is Andenomyosis dignoised? If anyone has any info on Andenomyosis, I would much apperciate it. I have Endo and suspect Andenomyosis also. But I have no info about it. "Such as treatment etc."
Hey Fairymagick,
I re-read your original post and you asked if anyone had any info on treatments for endo and adeno. Have you looked into "LUPRON SHOTS" for the treatment for your endo & adenomyosis? LUPRON SHOTS are a one option for a treatment of endo & adenomyosis and since you asked about info such as treatment etc I was wondering if you considered them. There are good and bad points to the monthly shots. Just wonderin.
Tweets
Hey Fairymagick,
I re-read your original post and you asked if anyone had any info on treatments for endo and adeno. Have you looked into "LUPRON SHOTS" for the treatment for your endo & adenomyosis? LUPRON SHOTS are a one option for a treatment of endo & adenomyosis and since you asked about info such as treatment etc I was wondering if you considered them. There are good and bad points to the monthly shots. Just wonderin.
Tweets
djl
11-24-2005, 11:11 AM
Hi Tweets
i had Adenomyosis.
There are a couple of ways for your doctor to have an idea that you have Adeno. For instance, MRI. I had an MRI done about 9 years ago mainly for a back problem. It showed that my Uteris was enlarged and with a possible mass. So, at that point I new there was something up with my uteruis.
You can also have a Laparoscopy. I had one done along with a D & C 9 months ago and it showed an Enlarged Boggy Uteris. I was seeing a new OB at this point and he said that usualy mean Adeno or possible fibroids.
I had a Hyst a couple months after and Pathology confirmed that I had Adeno.
The ONLY true way of dx Adeno is having the Uteris removed and having Pathology test it and confirming the diagnosis.
You may also be abable to do the Lupron. But From what I was told by my Doc that if it IS Adeno, once you go off the Lupron your symptoms come right back. My doc DID want me to try the Lupron first to see what would happen, but I was also dealing with cysts on my ovaries aand I was in so much pain, we decided on the hyst.
I would discuss the possibility of Adeno with your doc. From what I was told Adeno is much more difficult to treat then Endo. It is also VERY damaging to the Uteris. My Uteris was a MESS !!
GOOD LUCK !!!!!
i had Adenomyosis.
There are a couple of ways for your doctor to have an idea that you have Adeno. For instance, MRI. I had an MRI done about 9 years ago mainly for a back problem. It showed that my Uteris was enlarged and with a possible mass. So, at that point I new there was something up with my uteruis.
You can also have a Laparoscopy. I had one done along with a D & C 9 months ago and it showed an Enlarged Boggy Uteris. I was seeing a new OB at this point and he said that usualy mean Adeno or possible fibroids.
I had a Hyst a couple months after and Pathology confirmed that I had Adeno.
The ONLY true way of dx Adeno is having the Uteris removed and having Pathology test it and confirming the diagnosis.
You may also be abable to do the Lupron. But From what I was told by my Doc that if it IS Adeno, once you go off the Lupron your symptoms come right back. My doc DID want me to try the Lupron first to see what would happen, but I was also dealing with cysts on my ovaries aand I was in so much pain, we decided on the hyst.
I would discuss the possibility of Adeno with your doc. From what I was told Adeno is much more difficult to treat then Endo. It is also VERY damaging to the Uteris. My Uteris was a MESS !!
GOOD LUCK !!!!!
ktee_uk
11-24-2005, 11:50 AM
Hello all
Hope you are all doing ok.
{removed}
djl...... my gynos told me that there is a risk of endo growing back only if the hormones that trigger it are still present and still trigger-happy or in sufficient amounts to cause regrowth. That is why many women opt to have only their ovaries removed (which is pretty radical unless you are already approaching menopause or are sure you wont have any more kids) or use drugs to induce menopause (like the lupron). Personally, I had just had enough of hormones messing up my body. I tried the mirena coil for over a year but I felt dreadful with it, worse than with oral bcp.
I think once my gynos agreed that the adeno was the main source of my pain, they were happy to go ahead with the hyster.
Fairymagick........ my pain was described as being similar to childbirth but i got to have it every month. The pain started first on one ovary and spread to the other and my tail bone just hurt all the time. This would last for about a week, then down in a triangle to my pubic bone and all the way down to my knees. My uterus would contract/spasm and the pain at that point was so bad that I would start vomiting and then pass out, usually on the bathroom floor. That was when my bleeding/clotting was also at its worse and at times the bathroom resembled a scene from the texas chainsaw masacre !!!!
Looking back, I cannot fathom why I had so much pain and the rest of the world did not seem to notice except for my dear husband who really did not know what to do to help. He too could not understand the amount of pain and this is someone who underwent major surgeries and treatments for advanced colon cancer.
Anyhow, back to the point. My gynos also told me that lasering or ablations will not reduce pain problems but may alleviate "some" bleeding problems for endo. For adeno, they said the drug route (lupron) might work for bleeding but not always for pain and certainly not long term.
sorry for ramblings above but hope anything helps
regards to all
ktee
Hope you are all doing ok.
{removed}
djl...... my gynos told me that there is a risk of endo growing back only if the hormones that trigger it are still present and still trigger-happy or in sufficient amounts to cause regrowth. That is why many women opt to have only their ovaries removed (which is pretty radical unless you are already approaching menopause or are sure you wont have any more kids) or use drugs to induce menopause (like the lupron). Personally, I had just had enough of hormones messing up my body. I tried the mirena coil for over a year but I felt dreadful with it, worse than with oral bcp.
I think once my gynos agreed that the adeno was the main source of my pain, they were happy to go ahead with the hyster.
Fairymagick........ my pain was described as being similar to childbirth but i got to have it every month. The pain started first on one ovary and spread to the other and my tail bone just hurt all the time. This would last for about a week, then down in a triangle to my pubic bone and all the way down to my knees. My uterus would contract/spasm and the pain at that point was so bad that I would start vomiting and then pass out, usually on the bathroom floor. That was when my bleeding/clotting was also at its worse and at times the bathroom resembled a scene from the texas chainsaw masacre !!!!
Looking back, I cannot fathom why I had so much pain and the rest of the world did not seem to notice except for my dear husband who really did not know what to do to help. He too could not understand the amount of pain and this is someone who underwent major surgeries and treatments for advanced colon cancer.
Anyhow, back to the point. My gynos also told me that lasering or ablations will not reduce pain problems but may alleviate "some" bleeding problems for endo. For adeno, they said the drug route (lupron) might work for bleeding but not always for pain and certainly not long term.
sorry for ramblings above but hope anything helps
regards to all
ktee
djl
11-24-2005, 01:15 PM
ktee
You gave us alot of good information.
I had everything removed but my cervix in may. Regarding the Adeno, I am on HRT. 0.05mg of Estroderm. I am going back to my OB because I seem to be having anxiety attacks and still struggling with menopause.
You mentioned hormones can trigger the Endo to come back. Even though I had Adeno which is internal Endo, could this trigger Endo??
You gave us alot of good information.
I had everything removed but my cervix in may. Regarding the Adeno, I am on HRT. 0.05mg of Estroderm. I am going back to my OB because I seem to be having anxiety attacks and still struggling with menopause.
You mentioned hormones can trigger the Endo to come back. Even though I had Adeno which is internal Endo, could this trigger Endo??
ktee_uk
11-24-2005, 02:54 PM
Hi djl
I understand that certain types of hrt can trigger the endo to begin growing again so you do need to be careful. Also it can take several attempts to find the right hrt at the correct dosage which is most suitable to your circumstances.
good luck with your OB
ktee
I understand that certain types of hrt can trigger the endo to begin growing again so you do need to be careful. Also it can take several attempts to find the right hrt at the correct dosage which is most suitable to your circumstances.
good luck with your OB
ktee
watson401965
12-15-2006, 03:20 PM
Hello All. Well i had a coloscopy done also and they found some scar tissue and i had a 1. Laparoscopy 2. cystosopy and 3. hysteroscopy done and found out the i have Endometriosis and Andenomyosis. I have to start Luphn Depot shots for 6 months and go back for a Laparoscopy after 6 months and if that does not work i have to have a hysterecomy done. Any suggestions on what i should do? I will accept any advice and conceder it...Thanks:)
Shalel
01-10-2007, 06:16 PM
I have been Diagnosed with what the doc thinks is endo and Andenomyosis... I am going in for a lap on Friday the 19th... I am very scared... Up until about three months ago I had no real problems... I have been reading all of the post and think WOW all of you have been dealing with this for so long... Kudos for you to deal with it... It really sucks... I guess that I am lucky that my doctor is doing something about it... My stuff started back in may with a abnormal PAP which got me to the GYN that I am seeing now... He did a biopsy and that came back OK went back in October for the followup... Still no real problems yet... Had my followup PAP and then I started to bleed alot... Fresh blood... I could be just standing there and there it was... And then the pain started... Right side... I could tell for years when I would ovulate on that side because it would hurt but nothing bad just discomfort... The doc did a endo Biopsy and set me up for a US... This was mid NOV... Well the pain has just gotten worse and worse since then... My Doc was on vacation in December and on December 5th I ended up in the ER with the pain... ER did bloodwork and vag us... Said that I had a Cyst... Five days later I had another US... No cyst... Talked to the Nurse and she said that everything looks ok on the results just to wait until he comes back or go back to the ER... Well I just went see him last week and he said that he thinks I have Endo and Ando and I will not know until two weeks after I have the Lap if I have to have my Uterus out... I am very scared... Like I said I have never been really sick or been in pain... I am only 38... I have three almost grown kids... Which are all freaked out also... They just lost a teacher that was sick so trying to tell them that Mom is going to be OK is hard for them to understand... Has anyone been thru this and did everything work out OK..?
Thank you
Thank you
djl
01-11-2007, 01:00 PM
Hi
I understand what you are going through.
It is good that your doc is doing a Lap.
When I had my Lap done I was 39. I am now 41. The Lap showed Enlarged Boggey Uteris, my ovaries were covered in blood from ruptung cysts and I had severe Pelvic Congestion Syndrome.
He cleaned me up and did a D & C.
He told me my options either Lupron or a Hyst.
The next day he called me to see ow I was feeling. We did morwe discussions and said removing my Uteris would be the best bet. About 4 weeks later I went to see my doc and again he was discussing it. There were no signs of endo but felt I had Adeno, but the only way to truly dx it is through a hyst. So I opted for it.
3 weeks later I am in the hospital and allhe was going to remove is my uteris.
Well, he ended up removing my Uteris which he said was totaly damaged. It looked like I went through 3 c-sections yet I never had a c-section, it was that damaged. he ended removing my tubes and ovaries as well . My ovaries were very enlared so he felt they should go.
Pathology confirmed Moderate to Severe Adno and my ovaries were full of cysts.
I have NO regrets I am finaly NOT IN PAIN !!!
Any questiuons please ask. You will be fine!!
I understand what you are going through.
It is good that your doc is doing a Lap.
When I had my Lap done I was 39. I am now 41. The Lap showed Enlarged Boggey Uteris, my ovaries were covered in blood from ruptung cysts and I had severe Pelvic Congestion Syndrome.
He cleaned me up and did a D & C.
He told me my options either Lupron or a Hyst.
The next day he called me to see ow I was feeling. We did morwe discussions and said removing my Uteris would be the best bet. About 4 weeks later I went to see my doc and again he was discussing it. There were no signs of endo but felt I had Adeno, but the only way to truly dx it is through a hyst. So I opted for it.
3 weeks later I am in the hospital and allhe was going to remove is my uteris.
Well, he ended up removing my Uteris which he said was totaly damaged. It looked like I went through 3 c-sections yet I never had a c-section, it was that damaged. he ended removing my tubes and ovaries as well . My ovaries were very enlared so he felt they should go.
Pathology confirmed Moderate to Severe Adno and my ovaries were full of cysts.
I have NO regrets I am finaly NOT IN PAIN !!!
Any questiuons please ask. You will be fine!!
Shalel
01-11-2007, 02:25 PM
Thank you... What where your symptoms..? Did the doctor think that you had endo before or was he not sure..? When you decided to have the Hysto did they do if vag or abdom..? I am so afraid of surgery and the unknown... My huband is trying to understand but I think that it is hard... I think that he thinks it is all in my head..? Like I had said before a few months ago I had no problems... I always told myself just how lucky I was that I was so healthy and now this... How long was the Lap surgery and what did you feel like after..? Sorry for the questions...
Shelley
Shelley
djl
01-11-2007, 02:46 PM
I had symptoms for years.
Symptoms:
extremely painful periods since i was 13 to where I would be bed-ridden for the first couple of days.
Nausea, even vomiting at times
My period could go as long as 2 weeks
I had my first cyst when I was 18
I also had PCOS that was dx 1 year before my hyst. I have always been extremely irregular with my period.
The thing was is when I was 22 I started getting SEVERE ovulation pain. You said it was just discomfort, well I mine was only just discomfort. I was in reral bad pain. My stomache would swell and sometimes I couldnt even walk ithurt so much. I was living on Naproxen from that time on.
Finaly I started the pill in my early 30's, and it did help with the ovulation pain and irregularity But did nothing for the period pain.
Then about 4 years later it stopped working and I was getting massive cysts.
Have you tried the pill??
My surgery was abdominaly
Symptoms:
extremely painful periods since i was 13 to where I would be bed-ridden for the first couple of days.
Nausea, even vomiting at times
My period could go as long as 2 weeks
I had my first cyst when I was 18
I also had PCOS that was dx 1 year before my hyst. I have always been extremely irregular with my period.
The thing was is when I was 22 I started getting SEVERE ovulation pain. You said it was just discomfort, well I mine was only just discomfort. I was in reral bad pain. My stomache would swell and sometimes I couldnt even walk ithurt so much. I was living on Naproxen from that time on.
Finaly I started the pill in my early 30's, and it did help with the ovulation pain and irregularity But did nothing for the period pain.
Then about 4 years later it stopped working and I was getting massive cysts.
Have you tried the pill??
My surgery was abdominaly
Shalel
01-11-2007, 03:32 PM
WOW I feel for you... I do not think that I could deal with this for that long... You asked about the pill.. No I have not tried it... It makes me sick... I have not been on any birthcontrol for about 16 years... My youngest son is 15 and in fact I was on the pill when I got preg with him and then my husband had a vasectomy after he was born... I have read that the pill will actully make the Ando worse... I am not sure if that is true or not that is what I have read...
Like I said up until about three months ago I had no problems.. In fact I would brag about how healthy I was.. My periods were about every 25 or so days for about 4 days... The second day being the worse but still nothing to talk about... I think what scares me the most is just how fast all of this has happened... My doc did say IBS for one appt when I was talking about pain on my right side but never again... I was having an exam and I was having some pain on my right side and he said that he felt BM and said you may have IBS and that nerves can cause that... Well he has never brought that up again...
Thank you for all of your help... How long did it take to be up a feeling better after both surgeries..? I hope to have my Vag if he has to take my Uterus out...
Shelley
Like I said up until about three months ago I had no problems.. In fact I would brag about how healthy I was.. My periods were about every 25 or so days for about 4 days... The second day being the worse but still nothing to talk about... I think what scares me the most is just how fast all of this has happened... My doc did say IBS for one appt when I was talking about pain on my right side but never again... I was having an exam and I was having some pain on my right side and he said that he felt BM and said you may have IBS and that nerves can cause that... Well he has never brought that up again...
Thank you for all of your help... How long did it take to be up a feeling better after both surgeries..? I hope to have my Vag if he has to take my Uterus out...
Shelley
djl
01-11-2007, 04:33 PM
Regarding the pill and Adeno, the pill wont make it worse, but when it is Adeno the pill will not help the menstral pain. I suppose that is true because it didnt work for me. But it is supposed to help with endo pain.
As for the IBS thing..god you sound like me. My OB that IO had for about 20 years blamed the severe pain I was getting by the age of 39 (even though I was getting massive cysts) on a IBS issue and sent me to a Gastro doc. I beleived him. My gastro doc went through everything and said yes I probably due have an IBS issue but he ran some bloods on me including a CA125 for ovarian cancer. He wanted to rule everything out. He didnt like the idea I was having massive cysts evey month. Thank god it came back normal. the sad thing is my OB never checked me for that. My Gastro doc also sent me for Upper GI-Lower Bowel and a Colonoscopy. Everything was normal. Encept I had a small polyp on my colon but it normal not cancer. So I said to him oh so that is what was causiong my pain, and my gastro doc said no, I think you have a Endo issue. My mouth dropped to the floor. He said I needed a Lap done.
Well my OB kept blowing me off. I couldnt belive it . All he kept doing was changing my pill. My pill was chaged 5 times in 10 months and nothing was working. So I saw another OB and he said he could not belive I was sitting there and nothing has been done. Well this OB did something and now I am fine.
Also, regarding you not having any pain till recently. That can happen with Endo. Some woman dont even get pain and they dont know that they have it. The true way to test for it is with a Lap.
Endo can also cause IBS problems. I still suffer with mild IBS problems today.
But I am not in any pain like I used to be. It is like night and day.
You mentioned cysts. How many have you had and how big.
I have had so many I cant even count. I would have clusters of small ones that both my ovaries would be full of them to having cysts as big as almost 8cm in size and OMG when they would rupture I felt like I was being stabbed and would fall to the floor in pain...it was UNBAREABLE!! Even Percasedt didnt even help
As for the IBS thing..god you sound like me. My OB that IO had for about 20 years blamed the severe pain I was getting by the age of 39 (even though I was getting massive cysts) on a IBS issue and sent me to a Gastro doc. I beleived him. My gastro doc went through everything and said yes I probably due have an IBS issue but he ran some bloods on me including a CA125 for ovarian cancer. He wanted to rule everything out. He didnt like the idea I was having massive cysts evey month. Thank god it came back normal. the sad thing is my OB never checked me for that. My Gastro doc also sent me for Upper GI-Lower Bowel and a Colonoscopy. Everything was normal. Encept I had a small polyp on my colon but it normal not cancer. So I said to him oh so that is what was causiong my pain, and my gastro doc said no, I think you have a Endo issue. My mouth dropped to the floor. He said I needed a Lap done.
Well my OB kept blowing me off. I couldnt belive it . All he kept doing was changing my pill. My pill was chaged 5 times in 10 months and nothing was working. So I saw another OB and he said he could not belive I was sitting there and nothing has been done. Well this OB did something and now I am fine.
Also, regarding you not having any pain till recently. That can happen with Endo. Some woman dont even get pain and they dont know that they have it. The true way to test for it is with a Lap.
Endo can also cause IBS problems. I still suffer with mild IBS problems today.
But I am not in any pain like I used to be. It is like night and day.
You mentioned cysts. How many have you had and how big.
I have had so many I cant even count. I would have clusters of small ones that both my ovaries would be full of them to having cysts as big as almost 8cm in size and OMG when they would rupture I felt like I was being stabbed and would fall to the floor in pain...it was UNBAREABLE!! Even Percasedt didnt even help
Shalel
01-11-2007, 06:40 PM
I know that I had one Cyst and I think that I had another just because of how I felt... I have been really lucky... I am glad that the doc is doing something about this now and is not blowing me off... I have had Bm problems for about a year now with bloating and gas and now all of that makes since to me also... I read that this can really screw with your system... I thought that is was just things that I was eating...
One question that you did not answer was how long did it take for you to heal after each one..? Do you regreat having this done... Are you on HRT..? I have been having hotflashes at night.. Not all of the time... My husband says that my internal gage is off because when I am hot he is cold and the other way around...
Thank you for talking to me about this.. It really helps to talk to someone that can understand what I am dealing with...
One question that you did not answer was how long did it take for you to heal after each one..? Do you regreat having this done... Are you on HRT..? I have been having hotflashes at night.. Not all of the time... My husband says that my internal gage is off because when I am hot he is cold and the other way around...
Thank you for talking to me about this.. It really helps to talk to someone that can understand what I am dealing with...
djl
01-12-2007, 05:42 PM
The Lap took me about 1 week to re-coop. The main discomfort was pain in my shoulder. That is normal and it is gas. Make sure you walk alot that helps to pass it and also try drinking peppermint tea, that helps. The hyst takes about 6 weeks, but honestly it realy takes 1 year to fully re-coop.
Also mine was done abdominaly so I think that was another factor.
Yes I am on HRT. Small dose. I am on 0.05mg of Estroderm. It is a patch that I change 2x a week. I also take Xanax when needed. being so young at the age of 39 having a hyst everythging removed but my cervix cause me to have anxiety attacks. It was about 3 months post op when it started. I thought I was having a heart attack. I was getting realy light headed dizzy couldnt breath to the point the room was spinning around and almost fainted a few times. I saw my gp aND SHE SAID THAT MY HEART WAS RACING OVER 100 A MIN. She sent me for tests to rule out a few things and it was caused by my hormones. Everything was so out of waked from the hyst. The Xanax helps alot !!
I too was getting hot flashes before I had surgery. I think that was due to the fact of the cysts. It was causing my ovaries not to work correctly.
Oh and with the hyst make sure you walk because you will have gas issues with that too. BUT DONT OVER DUE IT. I was 5 months post op and thought I was fine. I was outside and threw a basketball into a hoop and then fell to my knees in pain !! Guess I wasnt ready for that yet!!!!! That is if you have to have a hyst.
Hey, the boards are here to help and I am here to help you !! I was in your shoes once and had alot of help from people on these boards. I thought I was loosing my mind at one point. Then I got help here and found a doc who listned and now I am 100% better!!
We are always here to help. Any questions dont hesitate to ask!!!
Also mine was done abdominaly so I think that was another factor.
Yes I am on HRT. Small dose. I am on 0.05mg of Estroderm. It is a patch that I change 2x a week. I also take Xanax when needed. being so young at the age of 39 having a hyst everythging removed but my cervix cause me to have anxiety attacks. It was about 3 months post op when it started. I thought I was having a heart attack. I was getting realy light headed dizzy couldnt breath to the point the room was spinning around and almost fainted a few times. I saw my gp aND SHE SAID THAT MY HEART WAS RACING OVER 100 A MIN. She sent me for tests to rule out a few things and it was caused by my hormones. Everything was so out of waked from the hyst. The Xanax helps alot !!
I too was getting hot flashes before I had surgery. I think that was due to the fact of the cysts. It was causing my ovaries not to work correctly.
Oh and with the hyst make sure you walk because you will have gas issues with that too. BUT DONT OVER DUE IT. I was 5 months post op and thought I was fine. I was outside and threw a basketball into a hoop and then fell to my knees in pain !! Guess I wasnt ready for that yet!!!!! That is if you have to have a hyst.
Hey, the boards are here to help and I am here to help you !! I was in your shoes once and had alot of help from people on these boards. I thought I was loosing my mind at one point. Then I got help here and found a doc who listned and now I am 100% better!!
We are always here to help. Any questions dont hesitate to ask!!!
jacksinn
01-12-2007, 06:14 PM
Shellyhall-
I had a hysterectomy a year ago. Vaginally. I was back to work in 2 and 1/2 weeks. I never felt so good!!!!!
After all the pain I went through - surgery was a piece of cake.
I had a hysterectomy a year ago. Vaginally. I was back to work in 2 and 1/2 weeks. I never felt so good!!!!!
After all the pain I went through - surgery was a piece of cake.
Shalel
01-12-2007, 07:02 PM
Thank you for all of the information... I think when all of this is over I will look back and say to myself what was all all worried about... I go for my Pre-Op monday and then LAP on Friday... Were you really tired all of the time before surgery...? The day time is the worst... It seems like when I get home I feel like I have more energy... Who knows... I am off for three days this weekend so maybe I can get some sleep... It is suppose to be really cold here this weekend so that can be my excuse to lay around... HAHA... Also my husband leaves Tuesday for a few days so that also will be nice and quite... I think a few days to my self will be nice... I still have my kids at home but they are busy with school/work and friends... Thank you again and I hope you have a great weekend...
Shelley
Shelley