endometriosis? (female issues mentioned)

mom2raven

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does anyone here have endometriosis?

I had my remaining tube tied yesterday (after much thought) and was diagnosed with endometriosis. Now I know just how blessed I am to have my 3 beautiful kids and how lucky I am that we did have them young and quickly (not that young, I was 23).

Anyway I have always had horrible heavy periods, like I should not leave the house heavy, and now I am sure this explains why, it may also explain the ectopic pregnancy I had in September when I lost my left tube and maybe even the pain I went to the doctor for last month when they checked for an ovarian cyst (and I did not have one).

What can you tell me about it?
 

esrgirl

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I have endo and was actually diagnosed with it when I was 15. I had horrible periods and was anemic most of the time. I recently had to get back on the pill (not a decision I was very happy with making) because I went six weeks with a period, which stopped for a couple days, then restarted the day I was due for a pap test. I was on the pill continuously from 15-25, when I got married. I had emergency surgery at 17 for what we thought was appedisitis and the doctor removed a pretty decent amount of endo from my colon, as well as other spots. I was actually diagnosed with Crohn's Disease via sigmoidoscopy and eventually IBS, but it ended up being endo! I think having had the laser surgery, plus being on the pill for so long kept the endo at bay for the first 2 years of my marriage and I stopped taking it until recently. It made me very nauseas as a teen, the pain was terrible, and I ended up missing school and various activities because of it. I'm 28 now. I've had three gynocologists tell me that I should get pregnant before 27, otherwise it will get harder. I figure at some point when we've both finished school and have health insurance I'll have another scope done and try to get pregnant again. I don't want to get too excited about the possibility of having children, because at this point it's pretty unlikely. I had a coworker who had 4 children by the time she was 24 and people thought she was nuts, but she had endo and I understood completely. Ovarian cysts, according to my doctor, tend to cause abnormal bleeding more so than endo and both are extremely common.

Some consider it an autoimmune disorder. It is more common with women who have certain health conditions, such as migraines and fibromyalgia. Some research says it is also pretty common with women who were abused in some way. Basically the lining of your uterus ends up outside your uterus, some believe it literally shoots out of your fallopian tubes. When you have a period it literally sheds were it is, causing pain. There has been at least one case of it going to a woman's brain and it can travel through your body- hence being in my colon, or in your bladder. There are some hardcore medicines out there to treat it, but I couldn't tolerate 'temporary menopause'. The pill, my diet, exercise, and herbal supplements (cramp bark, red raspberry leaves, evening primerose) have helped me. I no longer use pain medicines, but when I do have cramps I take two aleeve and two extra strength tylenol at the guidance of my doctor. There are several books on the subject. My mom, who is 57 and had a hysterectomy at 29 because of endo, still has endo in her system. She also has cysts. Two of my aunts had hysterectomies before 30 for the same reason.

Wow, that was a long post! Sometimes a good rant is in order
 

mews2much

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I have it and know how you feel. That is why I do not have Kids. I can not stay Preg past 2 Months. I also have terrible Periods. I had to stay home for 4 days this last time. I have the Anemia too and take 2 325 Mg of Iron every day. I am really sick of being Sick every Month. I get Golf Ball size Clots too. What works for you?
 

marianjela

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I have endo, but wasnt diagnosed until after my last son was born. I have been on hormone therapy (basically birth control pills) but they drive me crazy. My doctors are more conservative about it and want to avoid hysterectomy if possible even though I am obviously done having children. My mother and aunt both had hysterectomies (in their 20s) due to endo and cysts. My grandmother (their mother) had a hysterectomy in her 40's due to cervical cancer (possibly undiagnosed endo).

Anyway, I manage my pain by alternating Tylenol, Aleve and Motrin as another poster said. I also have large clots and just this month switched to the Diva Cup and think it is the greatest thing since sliced bread! Pads and tampons were never enough before, but this month I didnt have one leakage problem. Love it.

Every doctor is different. My cousin had an immediate hysterectomy when she found out about her endo - she INSISTED on it and one of my best friends was diagnosed with it 10 years ago and had a hysterectomy at her doctor's recommendation. Who knows. Being on the pill did seem to help me. Weight gain and laziness are probably the main reasons I didnt like it so much. If I forgot a pil, I hated that I would start to spot immediately. I have consider going on the Seasonale pills that minimize the number of periods I have. That is very appealing to me!
 

theimp98

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sorry, mind if guy pops in?

My best female friend , of like 20 some years, has it.
She went in for a operation for it, couple of months ago.

She said they used laser for it. She was back up in a couple of days. Said she feels 1000% better. but i guess she said it could very well come back again
 
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mom2raven

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Originally Posted by theimp98

sorry, mind if guy pops in?

(
No problem, I just warned that girly stuff was in here so guys would not come in and go ick.
 

esrgirl

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Having the laser/scope surgery greatly increases your chances of becoming pregnant. I will most definitely have it done again- the relief for me was great. I would also love to try Seasonale- but it is super expensive. I get a generic pill, Levora, for cheap from Planned Parenthood. I just hate being on the pill. My schedule has been a little crazy, due to work, and I usually take the pill at night- but I've been working quite a bit later, thus taking the pill later, and spotting every day! I guess I'll start taking it in the afternoon now. I just hate how even an hour's difference causes spotting- makes the birth control aspect very effective
 

roxsam

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I just got a possible diagnoses of Endo TODAY.

Been having lots of problems...BAD menstrual cramps, I roll around the ground in agony and think about cutting myself open (ok not seriously, but I do wonder if the cramps would go away, lol!)b/c of the pain eveyr month, and have missed work for it. I also have BAD pain with IC (which sucks being newlyweds who were virgins before). I went to 2 Dr's who said to "deal with it". Today had my 3rd appointment with my new doc and since he's ruled out pretty much everything else with other treatments, he told me I might have Endo. I also have confirmed cysts on my ovaries throughout my whole cycle.

He scheduled me for surgery June 13!!! Will be doing lap an D &C to diagnose and treat if they find anything. I do hope they find something so I can feel better!
Any advice?!

Oh, and I cannot take BCPs, they give me migraines.
 

marianjela

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Originally Posted by esrgirl

I would also love to try Seasonale- but it is super expensive. I get a generic pill, Levora, for cheap
I've had my doctor have me take regular pills, but skip the placebos and start a new pack. As long as you dont skip the real pills (the first 21) you wont start.

The first couple times you might spot when you're supposed to have your period, but after that nothing.

Only thing is your doctor has to know about it because your prescriptions will run out too early and you still run into the issue of - if you forget one pill... you'll be spotting or starting.

I did it for 3 months (for the samples I had) then gave up. It was nice not to have a period for that long
I've even heard of women doing it year long... Seen a TV show where a female Gyno did it herself and was talking about it. Said they werent sure of the effects of taking it year long... who knows.

If I wasnt so afraid of menopause, I would push the issue with my doctor for a hysterectomy... but after seeing my mom and aunt go through early meno... I think I'll wait
 

swampwitch

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I was diagnosed with severe endometriosis when I had a laparoscopy and subsequent surgery for an ectopic pregnancy. We are very blessed to have had our daughter after all that!

I never had any pain. I guess there's always a silver lining.
 

strange_wings

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My mother started having issues with it in her late twenties, had a hysterectomy at 33-34 (can't remember if it was right before or right after her birthday). Her mother went through the same, hysterectomy at age 35.
I'm hoping I won't continue the pattern, I inherited enough problems.

Originally Posted by Marianjela

I've had my doctor have me take regular pills, but skip the placebos and start a new pack. As long as you dont skip the real pills (the first 21) you wont start.
This can only be done with monophasic pills, such as Seasonale is. The others have differing amounts of hormones in them and won't work.
 

sneakymom

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I have it.

I had always suspected I had it. My periods were heavy, long and hurt. We're talking I would sit with a heating pad on my abdomen for 3 days when I started, and take motrin, and I would STILL be in pain (sigh). I had one WONDERFUL (Not!) doctor tell me that "heavy and irregular periods are normal when you come off the pill". UGH. I'd been off the stupid pill for almost a year at that point. Needless to say, I never saw that doctor again.

It wasn't diagnosed though until after we'd been trying for 2+ years to get pregnant, and it just wasn't happening. Had a Lap done, and though it wasn't as bad as I've heard some people had it, I still had a pretty bad case of it.

I was on BCP's continuously. Even though we decided that we weren't going to have any more kids. Why? Because the RE found an ovulation problem with me, said I'd have to take drugs in order to have any more kids. And you know what? I was DONE with the infertility rollercoaster. So I got off


Had to stop the continuous BCP's though b/c they were raising my blood pressure. So for the last year I've been taking the Depo-Provera shot. It's ok, though I've put on weight with it (and have struggled to take it off). However, I don't get periods, so I don't get any pain.

I'd love just to do a hysterectomy and be done with everything. My last GYN had said something about it. But then she cut back on hours and I switched doctors. This one really didn't say anything about a hysterectomy, just asked me how the Depo was working. So I guess I'll just stay with it for now.

I worry about my girls. My oldest just started her period (she's had 3), and she said this last one was kind of heavy and painful. I don't want her to have to suffer as long as I did though. So I said we'd just watch stuff for the time being.
 

marianjela

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Originally Posted by Marianjela

I've had my doctor have me take regular pills, but skip the placebos and start a new pack. As long as you dont skip the real pills (the first 21) you wont start.
Originally Posted by strange_wings

This can only be done with monophasic pills, such as Seasonale is. The others have differing amounts of hormones in them and won't work.
I dont know - it worked for me. I took several different kinds, throughout the last 20 years. My daughter has gyno issues already and her doctor put her on BCPs, she does the same thing at her doctor's recommendation but only every other month. She takes Tri-Sprintec (which I believe does have different levels in each week) but works for her too.

Who knows.
 

marianjela

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Ok, here's what I found, from the MayoClinic Women's Health website:

How do pills that eliminate some or all your periods differ from other birth control pills?

Traditional birth control pills make your reproductive system mimic a regular 28-day monthly cycle. For the first 21 days, you take active pills containing reproductive hormones. For the last seven days, you take a placebo. While you're taking the placebo pills, you bleed vaginally, as if you were having a regular menstrual period.

By contrast, extended-cycle birth control pills contain active hormones for every day of the month. The newest extended-cycle regimen, Lybrel, is a low-dose pill that's designed to be taken continuously for one year, with no breaks for hormone-free intervals. Lybrel is meant to suppress all menstrual bleeding.

Two other specially designed, extended-cycle pill regimens — Seasonale and Seasonique — are also currently on the market. With both pills, you take active hormone pills every day for three months, then you take one week of placebo pills (Seasonale) or low-dose estrogen pills (Seasonique). You'll experience menstrual bleeding during that week.

Can you use ordinary birth control pills continuously to prevent having a period?

It's possible to prevent your period with continuous use of any birth control pill. This means skipping the placebo pills and starting right away on a new pack. Some evidence suggests an advantage to this type of pill regimen. By continuously taking the pill, you prevent hormonal fluctuations that are responsible for bleeding, cramping, headaches and other discomforts associated with getting your period. However, you're at greater risk of breakthrough bleeding — bleeding between periods. Continuous use of your birth control pills works best if you're taking a monophasic pill — with the same hormone dose in the three weeks of active pills. If you're taking a triphasic pill — with a different hormone dose each week of the active pill phase — using them continuously carries a much higher rate of breakthrough bleeding.

You may find continuous use of birth control pills a convenient way to avoid having your period during an important occasion or trip. Taking a monthly regimen birth control pill continuously is fine for about three months, but then you should plan on taking the placebo pills so that you'll have a menstrual cycle.
 

katiemae1277

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I've done the continuous pill thing, always worked very well, no matter what type of pill I was on: low-dose, tri-phasal, etc. I've heard that most female GYNs do it all the time
 
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mom2raven

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Originally Posted by katiemae1277

I've done the continuous pill thing, always worked very well, no matter what type of pill I was on: low-dose, tri-phasal, etc. I've heard that most female GYNs do it all the time
The whole taking the pill forever thing is all fine and dandy, but I got my tube tied because I did not want to continue to take the pill! I did not suspect that I had endo (or I might not have tied my tube!).
 

marianjela

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Originally Posted by mom2raven

The whole taking the pill forever thing is all fine and dandy, but I got my tube tied because I did not want to continue to take the pill! I did not suspect that I had endo (or I might not have tied my tube!).
Yeah right!
My hubby was neutered, and I didnt think I'd ever have to take any of those stupid pills again either. I wasnt dx'ed with endo until after my last son was born. I guess being pregnant masked what was going on. Kind of like being on the pill... anyway...

C'est la vie I guess.
 

swampwitch

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Originally Posted by katiemae1277

I've done the continuous pill thing, always worked very well, no matter what type of pill I was on: low-dose, tri-phasal, etc. I've heard that most female GYNs do it all the time
Beware of this - it works well until you stop the pills. Many women are then thrown very hard into full perimenopause and menopause symtoms! This happened to my sister when she was 38 and she was still having really bad hot flashes 20 years later.
 

KittenKrazy

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My best friend, who is now 38, has always had problems with endo, ever since we were in high school. She finally gave in a year ago and had a hystorectomy done, and is doing wonderful, but she's had it so long that the surgeon found it attached to her colon too, and its going to take another much more serious surgery to take that out.
 
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