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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
Told I Might have Endo- Scared and Clueless!
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Bunzo24 posted:
Hello Everyone,

Since I was 14 I have had HORRIBLE HORRIBLE cramps (to the point of vomiting and passing out) for the full 5 to 7 days BEFORE my period. The second my period comes I am FINE. At 14 my doctor put me on the pill and it worked to quell the cramps for 14 years despite some occasional breakthrough cramping here and there. I got married when i was 28 and went off the pill in hopes of regulating my system so I could have kids. For the past two years I have reverted back to the horrible "cramp week," as I call it, where my life if dominated by pain and anti-inflammatories. After consulting with my doctor she said to either get pregnant (easier said than done!) or go back on the pill. She mentioned perhaps doing the laproscopic (sp?) exploratory surgery to confirm her suspision of Endometriosis but also stated that it can be harmful to conception chances. I am so confused and scared. I have made an appointment with another doctor for a second opinion but I am just confused.

My question is this- if it is Endometriosis why does my pain and cramps come for a full 5 to 7 days BEFORE my period and then nothing- a normal, painless period?

Also- my husband and I are trying to conceive starting this month. How many of you were able to have healthy children with Endo? How long did it take you to conceive?

Any words of wisdom are welcomed...
Reply
 
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jenkoelenko responded:
Hello! I wish it were under better circumstances, but welcome! All of the ladies here are fantasic, and we all share our experiences I have some similar experience as you it sounds like. My Doctor says that I've had endo at LEAST since I was 15, prolly earlier. I have stage 4 endo. I was diagnosed when I was 21, via the lap. sugery your dr's talking about, after the surgery my dr. told me that if he were to guess my age solely by my insides and what he saw, he would put my in my 40's. (what EVERY 21 yr old wants to hear.....). My endo was so severe, and I had quite a bit around my femoral artery, that I was put on Lupron Depo for 6 months (medical menopause - completely temporary). We've now been trying to concieve for almost 5 years. I did get pregnant a couple months ago, but my poor baby only made it to 10 weeks. I've heard from many other women with endo, and from drs that it may be easier to get preggo right after the surgery, because your organs aren't tied down by endo tissue. It may very on what stage endo you have... I'm not sure. Since the "menopause" I've been on about 7 rounds of clomid altogether. I don't know if you're familiar with Clomid, its a fertility drug, and that's one of the things that finally helped me get pregnant. Let me know if you have any other questions!!
~Jenna 24 ttc since 1/07, dx'd w/ endo stage IV via lap 06/08, 1 round lupron, 4 rounds of clomid, dx'd w/ PCOS 06/11, more clomid, m/c 9/2011 - my sweet little angel
 
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Bunzo24 replied to jenkoelenko's response:
Jenna thank you for sharing your experience. Before your surgery, what were your symptoms like?
 
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jenkoelenko replied to Bunzo24's response:
Sorry this is a little TMI, but, you've been warned lol!
A lot of pain, not that I noticed any specific timeframe... ANYTIME I would try to "hold it" and not use the restroom it would be excrutiating... so incredibly much pain! this is one thing that has started back up again recently, making me a bit nervous. It seems to be a little bit worse when holding in a number 2... (TMI.... I know....) But that may just be because of where my endo may tend to accumulate. I'll try to think of some more and let you know...
~Jenna 24 ttc since 1/07, dx'd w/ endo stage IV via lap 06/08, 1 round lupron, 4 rounds of clomid, dx'd w/ PCOS 06/11, more clomid, m/c 9/2011 - my sweet little angel
 
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jenkoelenko replied to jenkoelenko's response:
a TON of pain with sex... which was terribly unfortunate. It still hurt for a little while after the surgery, but then it slowly subsided until it (pain) was mostly gone 2 months later. Cramps, for me, were particularly bad a couple days before and first day of my period. Hope this all helps just a little. Overall, the surgery was VERY helpful for me! Keep in mind, though... it IS a surgery. I think getting a 2nd opinion is a good idea.
~Jenna 24 ttc since 1/07, dx'd w/ endo stage IV via lap 06/08, 1 round lupron, 4 rounds of clomid, dx'd w/ PCOS 06/11, more clomid, m/c 9/2011 - my sweet little angel
 
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SasiSue28 responded:
Hi! I was diagnosed with stage 3 Endo when I was I think 16 or 17 via surgery. She couldn't clean much out at that time because it was so active. I had horrible horrible horrible cramps. Even just laying in bed was painful, couldn't walk or anything. My mom had endo too. She conceived my older brother no problem, she had to work for me. Anyways, I had surgery and then my doctor (who is amazing and homeopathic) put me on BC to where I would have at least 1 period a year, then eventually 2 and eventually every other month and so on. It was either that or have a baby.. haha not at that age! I didn't want to go the pre-menopausal route. I have not had a surgery since then. Ever once and while I feel a sharp stabbing like pain mostly on my right ovary side during my period but I have been off BC since October in hopes my hubby and I can have a baby and since then I haven't experienced too much pain or periods either. Basically what the surgery does it confirm if you have Endo (really the only way how) and to clean it up. Basically Endo is where the lining of your uterus does not exit your body like it is supposed to during periods. thats why they say to have a baby or stop your periods via BC. I hope this helps or answers any of your questions. Good luck conceiving.
 
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amandapuckett responded:
with me it was different i have the horrible pain the week before and the whole week during and the week after. it has gotten worse in the last 3 years, but my point is that i couldn't get pregnant off of birth control. well i could but i didnt carry the baby. i have 3 children and all 3 i was on bc. i say you just keep trying as far as i have learned it is different with everyone. good luck.
 
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mcgalla responded:
Hi and welcome to the board! Sorry to hear about everything you are experiencing. The pain you have is typical of endo, it can show up whenever and make period weird, etc. Like Jenna said I have heard many other women say that their doctors suggest trying to get pregnant after a Lap surgery because it is your best chance when having the endo cleaned out and with the surgery they can also see what condition your fallopian tubes are in which will give you a better idea of what you are up against. With that said, they are many many women with endo that get pregnant and have healthy babies! For some women it takes a little while to get preg, others it may take several years, and some are blessed getting pregnant right away. Everyone is different. It took me close to a year of ttc which is about average for any women even without endo. Here are my tips: Don't stress as that can make things more difficult but just enjoy the ttc process (easier said than done I know), start taking a prenatal, track when you ovulate (or use ovulation test strips you can purchase at a cvs, walmart, etc).

Good luck with everything and I'm sending lots of baby dust your way! Keep us updated on how things are going!
Carrie


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