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Emmie Ann
09-20-2003, 04:20 AM
At 15 my doctor put me on Depo-provera to try and control migranes and excessive bleeding. After about 1 1/2 years of getting injections I found out through a nurse that the doctor had given me far to many (about 18, no body really knows the exact amount, she neglected to record all of them). So My doctor got in trouble by the nurse and I was told to go home, not worry about it and that I wouldn't be given any more injections. Turns out that your body can get addicited to depo-provera. After 1 1/2 months of bleeding (my body was going through withdraws), and several pleads for help to my doctor with no help given. I was put in the Hospital by another doctor-I had gotten as close to bleeding out as possible he said, 3 blood transfusions, 1 surgery, 6 days in the ICU, and 2 harsh months of recovery wasn't enough. I am still suffering through it, since then I have had 3 more surgeries. I now have problems with endometriosis, cysts, and adhesions. A new doctor started me on Depo Lupron two months ago, my last hope to stay fertile. I get hot flashes about every 2 hours, I haven't noticed very many mood swings or any weight gain though, so I guess thats good. But I still have my period and constant pain. My doctors have told me several times that I shouldn't be alive. I now have no doubt in my mind that God is going to use me, because if he wasn't I wouldn't be alive. So I am putting all my trust in the Lord and asking for all of you reading to please keep me in your prayers. If I can help any of you in any way then please contact me. God bless and best of luck!!

[This message has been edited by Emmie Ann (edited 09-20-2003).]

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dah
09-20-2003, 12:46 PM
yes i be praying for you

mlgable
09-21-2003, 12:17 AM
I think just telling your story about how nasty depo provera can be for some people is your way of helping many many people since tons of people read these boards. The problem is there are many people who have suffered with problems for years that the doc couldn't pin down and once the women read more on depo and showed their doc the information the docs couldn't believe it and took them off immediately and the problems slowly started to go away but some of the effects many linger for years. I am sure you will have helped a great many women already today.

jwarneka
09-21-2003, 05:49 AM
I am so sorry you had to go through this, my main question would be what happened to the idiot doctor?
An overdose of this magnitude shouldn't be taken lightly by anyone, that is just plain insane,
I tried Depo for almost a year, and it did me no favors either, I had constant bleeding, and pain, then just by coincidence, lol about a month after I stopped, I was found to have serious dysplaysia of the cervix, and had to have part of it removed, bad Juju, I wish you all the luck in the world, and I hope that you soon find some peace :)

Emmie Ann
09-21-2003, 02:22 PM
-Emmie Ann-
Alot of people have asked me why I haven't had anything done to the Doctor, At first I was really mad and I wanted to get back at her for what she had done. But I thought about it and I didn't want to carry that load, it was to heavy. I ended up giving it all to God and for the most leting go. I now focus on getting better and trying to help others with the like problems.

PaNik5717
09-23-2003, 03:20 PM
Hi Emmie Ann,

I have been reading your posts these past few days and I am so happy you are here. I am so sorry to hear that others are going through similar things, but it has also been difficult to find anyone else with experience. Maybe you are here to help me!

I really need to go back to bed, but I was hoping you could read my other posts about sporadic bleeding and stuff and maybe offer me some advice from your own experience. I asked my doc yesterday if I could go off of my bcp's altogether to see if things will get better. She said we are at the point of doing a D&C, but we will wait two weeks for me to get off the pills and see if I stop bleeding. I tapered down to one yesterday and I am supposed to take one today and one tomorrow, then I will be off. She said to call her if the bleeding gets to me or freaks my mom out too much and she will have me take four pills a day until she can get me into the OR - she is two hours away from me.

I have been flooding for the past three or four hours. I was planning on buying depends, but I didn't get there fast enough and I don't want to leave the house now, so I have piggy-backed overnight pads, but I still leak through. I am wondering how many hours/days I should wait before I call her and go ahead with the surgery. What do you think? I am a little older than you, but only 26. I have had three docs look at my ultrasounds and no one sees anything of significance - and I haven't responded to hormonal treatment unless it is a really high dose of hormones.

Maybe this bleeding will slow later today, like it has been, but it is expected to progress to full-blown withdrawal/period by the end of the week.

Thanks for being here! I'm going to go lay down and hope this slows down.

Nik

Emmie Ann
09-23-2003, 09:12 PM
Nik-
I am so sorry to hear about your situation. I know exactly what you are going through. But if you take yourself off your bcp the odds are that you will still bleed and the bleeding might even get heavier. My advice is to go to the doctor/er asap, where ever you can get help. Bleeding like that is not normal no matter how hard you try to convince yourself. I realize that you may be scared but dont gamble with your body. I almost died becasue I had waited, the good news is that I am alive, the bad news is I am sill having problems. And what really breaks my heart is I may not be fertile. Please dont let yourself get into the same mess, get help now. God Bless and best wishes.
-EA
Please keep me updated

[This message has been edited by Emmie Ann (edited 09-23-2003).]

PaNik5717
09-24-2003, 01:15 AM
Hi Emmie,

I have a few questions you may know from experience. How long do you think it would take for my hemoglobin (red blood cells) to drop a few points? The last time I was tested, I was almost at normal, but I don't want to get below 9 or 10. I have been on iron, so my production has been keeping up, but now that I am expecting to bleed even more for about ten days, I doubt my body will keep up. The doc was really unclear, she just said to call if I got too worried about the bleeding. I really would like to see if taking away all of the hormones that were meant to fix the problem, might "cure" me. I don't know if high doses of regular pills - as many as six a day - could have the same bad effects as the depo.

Also, what kind of surgery did you have? I'm not as concerned about my fertility as you are, but the doctors are. They are all so scared to operate because I don't have kids. My last doc sent me home to keep bleeding until I came back in with two kids. Then, he would operate on me.

Thanks so much for being there...

Emmie Ann
09-24-2003, 02:41 AM
I had 4 laps. They made three little slits into diffrent parts of my stomach; my bellybutton, about 4inches lower and one about 4inches to the left of my bellybutton. Luckly they were able to go through the same incisions each time.
All it took for me was one really heavy night of bleeding for my hemoglobin to drop from 12 to 7 and that was even with me taking iron pills. Everyone's body is going to act diffrently with bc's, but in my history I have found bcp's such as orthotricycline to work for me. Depo provara gives you all the medication of 4 months all at once with one injection. So, 6 days of pills are nothing in comparison.
I am truly sickened by the thought that a doctor would send you home with out helping simply because you haven't had children yet. So it sounds like you need let that doctor stick to that and find a new one. Some doctors just don't realize that not only do they need to do their jobs but they also need to help us in the process.
If I can anwser anymore q's for you then ask away and I will try to answer them to the best on my ability. God Bless

PaNik5717
09-24-2003, 10:51 AM
Hi Emmie Ann,

I know it is silly, but my bleeding has been so sporadic that no doc has really seen me bleed in months. I have typically been bleeding more in the evening or overnight, but still almost every day, and usually three or four overnight pads all at once. Nothing worked to completely stop it, except the adrenaline of seeing the doc. That, combined with the fact that my hgb wasn't dropping probably caused my last doc to send me away. He just didn't see the problem - like all of the stained clothes in my bathtub!

So, in addition to honestly wondering if my bleeding will get better without all of the hormones, I do want to lose at least a point or two in hgb, because that determines how bad docs think your bleeding - I have actually seen it listed as a deciding factor. (Nevermind the fact that I did get down to 8 before I started the iron supplements.) I think I have done it though. My head is so foggy today. I am weak and my heart is racing. But, the bleeding has slowed for now. It lasted for about 13 hours yesterday at the rate of one overnight pad every 50 minutes or so.

I just hate for my doc to think I am faking it. But, she does seem to respect the fact that I sought her out in the city and I have kept a log since I met her. She just can't figure out what is causing the bleeding so the D&C is next. I guess you can't tell me about that, though. It looks pretty simple as long as they don't slip and puncture anything. I guess it could also give her a sample to look at to see if anything suspicious is going on.

I am going to see if I can get my finger pricked every few days here in town to help me decide when too much is really too much. It has been so depressing to see the blood fall out the other end after I have worked so hard to build it up. I want to be a wilderness instructor, but I am not strong enough right now and every time I exercise, I lose even more blood.

Thanks for listening. I don't have enough oxygen getting to my brain to filter anything right now, so I probably wrote too much. But thanks.

Nik

mlgable
09-24-2003, 12:27 PM
If you are weak from the severe bleeding you need to go to the emergency room ASAP to get checked out. You could wind up passing out from the blood loss if you don't get this checked out. Severe anemia is very serious so don't delay getting this checked out.

PaNik5717
09-24-2003, 06:34 PM
OK, I went and got my blood drawn. I may not get the results until tomorrow, but I know I will feel better knowing what they are.

Emmie Ann
09-25-2003, 03:32 PM
Hey Nik dont leave us hanging did the results come in??

PaNik5717
09-25-2003, 03:42 PM
Not yet. They also tested my clotting factors, which is good. I recently read that there are a few conditions that I have never been tested for that can cause bleeding. I do pass huge clots of blood so I don't think I have a clotting problem, but it will be nice to know for sure. especially before the D&C.

I took my last bcp last night. I have only had light bleeding yesterday and today, but I expect heavy withdrawal bleeding this weekend. I really want to try this to avoid the surgery, but I also want to have enough of my own blood to survive surgery.

I also got really congested last night so maybe the weakness was due to a cold or something else. If they don't call by the end of the day, I will call and see if they have the results in the computer. I am going to keep drinking as much as I can to make sure my body has enough fluid to compensate for the blood loss.

Thanks so much for checking on me.

Nik

PaNik5717
09-25-2003, 07:36 PM
I finally got the call. My hemoglobin is at 9 with normals for my area being between 14 and 16. I was so scared it would be at 12 and they wouldn't believe me!

Now I am scared about the next step. I am on hold with my gyn's office right now. Keep me in your thoughts and I will let you know.

...

Well, I left a message, but it was really close to the end of the day. Now, I'm not sure if I should take and bcp's today or not. I really expected my hgb to drop, but not 4 points! I don't think I will survive the withdrawal period, especially if it's going to be on the weekend when it is harder to get in touch with a doctor. Ugh!

[This message has been edited by PaNik5717 (edited 09-25-2003).]

Emmie Ann
09-26-2003, 02:58 AM
Hey sweetie I am so sorry that your hemoglobin levels are low. When I was passing clots it was actually because my bc had caused a build up of my ovarian wall and when I got off the bc my body broke down that wall and expelled it. Some people have clots I had clumps. The tissue was thick and there was a lot of it. So my doctor went in and cleaned all the dead tissue out manualy and my bleeding slowed and soon stoped. Maybe you could suggest this to your doctor and see what they have to say. Good luck, and keep me filled in.

Emmie Ann

PaNik5717
09-26-2003, 10:14 AM
You are such a doll. Thanks for writing to me. It helps a lot to know someone else has been there. Now we know what caused yours. Let's hope we can figure me out soon.

I still have hormones in my system. I have been on continuous pills taking anywhere from one to six pills a day since April. I did try a withdrawal bleed in July, but then things got even worse. I have been wondering what it would be like to go off of the pills, but there shouldn't be any lining built up since I have been bleeding almost daily since the end of June. The doctor did want to go in and scrape things out - that's the D&C - and examine the tissue a little. We thought we would try taking me off of the pills first. But, going off of them definitely means that I will lose more blood and I don't think my body can affrod to lose anymore if I am going into surgery. I am a little freaked out about transfusions. I don't know why since I donated to people in the past. Suddenly I just have a fear of receiving someone else's blood!

Does that make any sense?

I sure hope she returns my call this morning.

[This message has been edited by PaNik5717 (edited 09-26-2003).]

PaNik5717
09-26-2003, 02:36 PM
OK, they called. They were more interested in my hematocrit. I didn't know it, but the local doc faxed it to them. They called back again and told me to add more bcp's (three a day) until I see her again on the 7th. The 7th will be a pre-op visit and the 8th I will have a D&C and hysteroscopy. I'll let you know how things go and if I ever get a diagnosis.

PaNik5717
10-17-2003, 06:11 PM
Emmie Ann, (and mlgable, and everyone else) are you still here?

My D&C went fine, but my old bleeding pattern emerged about a day after the surgery. I waited a week and then I called the doc. She had me wait two more days so I called today. The bleeding is bothersome - especially when I bleed all over myself or someone else's couch - but the anemia is the worst. I have terrible headaches that get much worse for about twenty seconds after I stand up. I get dizzy if I am standing and talking at the same time - not enough oxygen to do both. I get up and cross the living room and I bump into the walls of the hallway. I don't know my numbers, but I know they are low.

The doc called back. She is terribly frustrated and out of ideas. She talked to her senior partner about me and he would have done all the same things. So, he recommended that I get the depo provera shot and get it more often than every twelve weeks. The last doc I had wanted me to get an IUD or depo, but I know both are contraindicated if you have dysfunctional bleeding and I know that both can have HORRIBLE side effects. I had discussed those things with this doc when I first started with her and she agreed, but now she wants to give me the shot. She seemed to want me there today, but she said to come in on Monday if I am still bleeding since I am two hours away - I already have a follow-up for Wednesday, but I guess the lab results from the D&C must show nothing at all.

I don't know what to do!!! My family is terribly worried about me and I have lost all quality of life. I would rather have a hysterectomy than the shot, but I don't know how to get one. My dad did talk to my PCP the other day and she wants me to see a hematologist. The one she told me to call can't see me until the end of November. She already showed my file to a local hematologist and he told me to go back to my gyn who then gave me a script for sleeping pills. The only thing I can find that my PCP might be thinking of is leukemia. Could that possibly cause abnormal uterine bleeding? I know that abnormal bleeding is one symptom as well as anemia and many of the symptoms of anemia.

I guess I am rambling now, but I am devastated at the idea of getting the shot and devastated that no one can think of anything else to do. I guess I am just plain devastated.

We haven't heard from you lately, Emmie Ann. How are you?

Emmie Ann
10-18-2003, 12:25 AM
I'm still here, I am so sorry to hear about you health. I have been praying for you and will make sure to keep you in my paryers!!

I have been having stabing pains in my lower stomach lately, so bad that I am having to keep the tears from falling. I try really hard not to complain about my condition to my friends, because I know that others have had it much worse than I. Also because I am hard headed and I dont want anyone know when I'm hurting. But it is just to bad now, so I have made an appointment with my Doctor for the 27nth. But until then he wants me to be constantly taking pain medication, so that I will be flowing through me at all times. But I am scared I'm not a big girl and when I take it I have trouble functioning, I have school and a job that I have to maintain. Well see how things are going when I see my doctor. I have a bad feeling that he is going to want to go back in. But the good new is that God loves me. Keep in touch chick and best of luck with you bleeding.

PaNik5717
11-28-2003, 12:46 PM
Hi Emmie Ann,

I hadn't heard from you since before your appointment last month. How did it go? Are you still in pain? Did he want to do surgery?

I really hope you have been able to focus on your school and your job and the holidays and that your health has taken a backseat to actually living.

Let us know how you are.

Nicole

Beth*
11-30-2003, 12:36 PM
Wow...what a story. Glad you shared it as many people dont understand what these "hormone" type drugs can do to your body. I will certainly pray for you and hope all goes well. God Bless, and keep on truckin'...you sound strong and like you have faith!

Beth





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