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Old 03-18-2007, 06:33 PM   #1
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abigail09 HB User
Questions about Endometriosis

Hello, This is my first time posting to these boards, but I have been reading them frequently. I've spent the last two hours searching the internet for information on Cervical or Vaginal Endometriosis. I'm not sure if either of these are the correct "names" of the condition so maybe that is why I'm not finding much literature....

I believe I may be suffering from Cervical or Vaginal Endo, as well as "regular endo". Some background. I've always had painful, heavy periods. After having my son almost 3 years ago, I had a pretty painless couple years. Then all the pain and heavy bleeding started to come back. My Gyn has diagnosed me with having Endometriosis, but has not done an official diagnosis via a lap. I am in agreeement with her on this diagnosis, however the course of treatment I'm on is not helping too much. I was started back on birth control about a year ago. This did nothing to help the pain or the heavy bleeding. I also have pain during intercourse, pain with bowel movements and urinating. For the past 6 months I've been on continuous birth control, meaning I never take the placebo pills and I go right to the next pack. The purpose is to avoid ovulating and having a period at all. During these 6 months I've still had 3 periods....and they were only a little less painful. I stress a little, I still ended up having to leave work a few days due to the pain. The pain is so bad that my dr has prescribed pain killers to get me thru the worst few days of my periods.

Since my body is still somehow managing to have a "period" every so often even while on continuous birth control, and these periods are disrupting my daily activities, I am planning on making another appt to discuss my options. I'm sure we will discuss doing a lap..... But I'd like to know if anyone has this symptom; when I am bleeding my vagina aches, really aches. Inside, and deep inside. Sorry if this is TMI, but the only way I can describe it is like if you had rough/dry sex that ended up hurting you inside.....or another way to explain is it is as if my body is "passing" something too big down thru my vagina (more than just blood flow) not sure if that makes sense! This is in addition to the cramping around the uterus. Does this sound like I may also have endo in the vagina or on my cervix?

I'd appreciate any feedback, or your personal stories... or suggestions on questions I should have for my Dr. Thank you all in advance

 
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Old 03-18-2007, 07:23 PM   #2
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Misnomer2773 HB User
Re: Questions about Endometriosis

abigail, endo is a pain, I can assure you. I just got through having a second lapor. to ablate the patches of it. I have back pain. I have pelvic pain. I have pain when I pee. I have pain during sex. I bleed during and after sex. I understand what you're going through. From what you mentioned, you could have some endo in your vagina, along with on your uterus. I would certainly suggest you have a laporoscopy, so that the doc can determine what stage you're at. It doesn't take much of it to drive you insane.

Best of luck to you in this situation..........

 
Old 03-19-2007, 06:08 AM   #3
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abigail09 HB User
Re: Questions about Endometriosis

Thank you for the reply misnomer. It sure is pain! I'm dealing with it today... I can hardly stand up straight. I've managed to drag myself into work but I'm not sure I'm going to make it thru the day. Although I'm not glad you have the same pain, it is reassuring to hear that someone else has pain when urinating... I've been complaining about this for years. I went thru all sorts of tests years ago and nothing was ever concluded. Did the laps help you? Have you done anything else to treat this painful condition?

I forgot to mention, I had two surgeries for sever dysplasure on my cervix. The first was the leep, the second laser. During my preganancy my cervix started to thin at 18 weeks, so they did the surgery (can't think of the name of it) to stitch close my cervix. THe little literature I did find on cervical endo, says you have a greater chance of having it if you've had these surgeries.... I called my Dr this morning to make an appt. I'm waiting for the nurse practitioner to call me back.

Thank you again for your response.

 
Old 03-21-2007, 06:22 AM   #4
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jmd324 HB User
Re: Questions about Endometriosis

abigail-I just wanted to let you know, too that you REALLY should do the lap if they offer it. I just had it done a month ago & it's no where near as bad as I thought it was going to be. the reason I say you should have it done is b/c depending on what stage of endo you have, the continuous bc can actually be bad for your endo. it all has to do with hormones. i have a friend who's got stage 3-4 and not only did the bc not work (it was about the same as you describe) but her new doc was the one that told her it's basically not even an option for her to take it anymore. i guess the estrogen is what causes it to grow/spread & the reason they but some people on continuous bc is to control the pain by not having a period at all. i'm sorry you have to go thru all this, i know how feeling bad all the time can wear you out. Please do the lap if they suggest it, at least you'll get a bit of relief & some peace of mind to know what's actually going on in there!!! good luck!

Last edited by jmd324; 03-21-2007 at 06:22 AM.

 
Old 03-25-2007, 07:38 PM   #5
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angellight HB User
Re: Questions about Endometriosis

abigail09,

Have your doctors suggested Lupron shots? Before they did the surgery, the had me take some lupron (spelling?) shots. This will make you stop getting your period, thus "drying up" the endometriosis. They had me try this for 6 months.

Then they may have you take the "pill" a low dose, just to help your body replenish your hormones. I'm sure your doctor can explain this much better than I can.

Maybe this is the way to go without rushing into surgery. I know these shots can be expensive, but I believe most insurances will pay for them.

I also had 2 lap's for endo. The last time they told me if I had been in the hospital instead of an out patient surgi-center, they would have opened me up all the way. I had lots of the endo and also tumors, cysts and because of my c-sections, I had a lot of scar tissue (my uterus and stomach were attached with scar tissue). This could be causing some of your pain also.(?)

I'm not telling you this to get you worried, I'm letting you know because I had 2 great doctors and they took care of me.
Hope this helps you a little bit! Good luck!

 
Old 03-26-2007, 09:41 AM   #6
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Re: Questions about Endometriosis

I have endo that's around stage 2. Ask your doctor if he/she is used to working with endo patients. My first gyno just threw pills at suspected endo patients. I had to seek out another gyno who handles endo, and she immediately did a lap just to see what we were dealing with. Thanks to her, I know what's going on (and even have pictures of what she burned off!) and she discovered a polyp on my cervix that was causing HEAVY HEAVY bleeding! My other doctor had told me I was too young for those! Hahahaha.

My advice to you:

First, request a lap. You are the patient and the doctor is working for YOU. Remember that.

Second, if any treatment is not working (and some you have to give a little time to make sure -usually three months) SPEAK UP!

Third, Be open and honest about your pain! Even a few spots of endo can be excrutiating. You'd be surprised how many stage one endo patients have instense pain and how many stage 4 have no pain at all.

Fourth, when you get your lap, make sure to tell your gyno to burn off any endo he/she finds. Even if it gives you just a few months of pain-free living, that's a few months you didn't have before. In most women, endo takes up to year to come back. BUT EVERY WOMAN IS DIFFERENT. My pain came back within 4 months. I know someone who went 2 years pain free, had a kid, and the pain came back a few months after birth. If there are adhesions, get them cut away.

And fifth, remember that endo can be on your uterus, cervix, vaginal wall, ovary, fallopian tube, bladder and intestines! Pretty much any organ in that general vacinity can end up with endo on it.

I hope you get answer quickly and find a way to manage your pain. I'll be starting to Mirena IUD on April 13 because I'm unable to tolerate the pill or depo shot and I'm not ready for a hysterectomy. The Mirena stays in your uterus for 5 years and is supposed to gradually stop your periods. Some people have done well on the depo shot (which ends your period, too) while others are just fine with BC's or just taking meds while on their periods. A lot of it has to do with how much endo is in you and where. Again, get the lap so you and your gyno can see what you're dealing with. It really makes a difference. Good luck and get feeling better.

Last edited by willo1980; 03-26-2007 at 09:44 AM.

 
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Old 03-29-2007, 07:52 PM   #7
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earthdayapril22 HB User
Re: Questions about Endometriosis

Hi there! I just went through a laparascopy 2 days ago to check If I had endometriosis and she found endometriosis on my fallopian tube and right ovary. I am only 21, so it will be a long battle for me, and not only the pain i have to go through, and the bowel movement changes but also i'm scared that my fertility is at risk. I recomend going through a laparascopy ASAP because it is the only thing that can really confirm if you have endo and don't wait until it's to late and maybe it gets stuck in your intestines or something ...

I wish you good luck and let us know how did it go.
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Old 05-08-2007, 07:09 PM   #8
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Question Re: Questions about Endometriosis - Adenomyosis now?

First of all I want to thank all of you who took the time to respond to this post, with very valuable information.

After I posted this, my Dr switched me from Yasmin to Seasonale. I've been on Seasonale now for almost 2 months, and have not had any breakthrough bleeding... but I would not expect I would yet anyway. I have gained some weight, but that's OK with me. Other than that I've been able to tolerate it well. However, I am still suffering some milder pain on an ongoing basis. I've had my first experience with what I describe as "lightening" sharp pains. This happened only once over a span of 4 days. I've also had mild cramping on and off, but no bleeding.

My Gyn is leaving her practice. She has been my dr since I was 18 (12 years) and is a very good one! So before she left I wanted to meet with her for my annual and to discuss my ongoing problems. She suggested that we schedule a MRI and a Lap. The MRI caught me by surprise. Apparently, she thinks that in addition to the Endo, I may also have Adenomyosis. I've spent the last hour or so reading up on this condition, and I must say I have the symptoms. I guess this is not such a bad thing... meaning it is not life threatening or anything, just painful. I plan to have one more child, so our plan is to treat any Endo found, stay on BC pills until I am ready to have a baby and just get through another pregnancy. She indicated after that, I may need "more invasive" surgery. My research tells me this would be a hysterectomy (but leaving the ovaries assuming nothing is found wrong with them).

During the exam, the pap killed! And when they (there was a student with her) both performed the pelvic exam there was this one spot they both hit that was really tender and quite frankly, hurt. She said that this was a nodule? and is a common indicator of endo. This is also why intercourse is painful... it's all starting to make sense now.

Sorry for such a long post, I guess I'm just looking for some information from you all. Has anyone been diagnosed with Adenomyosis? And if so was the diagnosis done via MRI? I've read conflicting information on this... some articles say a MRI is effective at diagnosing it and others say no. If you have this condition how do you deal with it assuming you have not had a hysterectomy? I am on Seasonale, but it does nothing to help with the heavy bleeding and cramping during my period. Really, the only benefit is that I only get my period 4 times a year.

Any information or advise you can offer will be greatly appreciated.

Thank you,

 
Old 05-09-2007, 08:13 AM   #9
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Re: Questions about Endometriosis - Adenomyosis now?

Before you have a lap with just any GYN, please find a endometriosis specialist. Find a doctor that can use excision to remove the endo, not just the laser to "burn it off." The leading doctors and researchers now say that this method is so much more effective at reducing pain, and removing the implants. You will see many women that have had 2, 3, and 4 to 5 operations. You will find that most only had a doc that lasered the endo, and very soon after they were "under the knife" again, because their pain was back.

Find a specialist. There risks with every surgery. Find someone who can get it right the FIRST time!

 
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Old 05-09-2007, 12:25 PM   #10
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Re: Questions about Endometriosis - Adenomyosis now?

Thank you for the advice.

It is not going to be my regular gyn who will/may perform the surgery, but rather a specialized surgeon in this field. I have not met with her yet, but I will be sure to discuss this issue with her. I go to a very good hospital in Boston, and am pretty confident in the care I receive there, but I admittedly do not know much about this surgery. So I really appreciate your advice and wisdom on the topic. Thank you!

 
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