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TTC #1 with stage 4 Endometriosis

Pud

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Hi.. I'd be really grateful to hear from anyone who is in the same boat as me or has a success story to share. I am 28 and married. My husband and I have not been using contraception for almost 3 years.
When I came off Bcp I knew within 1 month something was wrong. As time went on I knew for sure I had endometriosis because of the pain I suffer. 3 months ago I was diagnosed with stage 4 endo and was told there was nothing that could be done because the disease is all over my bowel, without it causing complications and possibly meaning I'd have to wear a colostomy bag. I was advised that my ovaries, tubes and uterus were all clear and therefore my endo should not cause me to be infertile. I was advised to get pregnant ASAP. Very frustrating as I'd been trying!!
Anyway, I've also seen a fertility specialist who has carried out lots of tests and has confirmed everything looks normal, therefore my infertility is unexplained. She said it is most likely the endo even though my endo specialist said the opposite??
My husband has been checked and although his sperm have below average motility, he has way way above average sperm count. 196million - he is proud of this lol. So we were told again we should have no problem falling pregnant.
I have a very regular 27/28 day cycle and the pain I experience just before and during AF is just horrendous. I am often off work at least one day each month. When I talk about pain I don't mean normal AF cramping. Because the endo is all over my bowel my pain is intense burning in my stomach and it causes me to get diarrhoea. Sometimes it's so bad I throw up and get rectal bleeding. I also suffer bad lower back pain. Sorry if tmi.
Yesterday I was on cd29 and was convinced I was pregnant as I'd suffered unusual symptoms and AF was late. AF is never late. I was kept awake all night with horrendous endo pains and I spent a few hours on the toilet and throwing up. Then AF showed up this morning. I was so disappointed and I am feeling so low about how ill my endo makes me. I couldn't even go in to work today.
Both my husband and I eat relatively well and we take necessary vitamins. We don't smoke and don't drink a lot. We do everything were supposed to be doing and I even use opk's. We know that I definitely ovulate. We've been told if we don't achieve this on our own, we will be referred for IVF in November.
I'd really appreciate your comments or advice. This disease is making me feel very lonely and my husband and I both want so much to be parents! Sorry for the long post and thanks for reading.
 
Hi Pud,

I am almost in the EXACT same boat, in fact, I was googling my symptoms and came across your post. I am 30 years old, same symptoms, stage 4 endo...with horrible bowel symptoms (bleeding included). I am weeks away from getting a second lap, this time to remove my tubes so that I can do IVF. I REALLY don't want to do this which led me to googling more about my options. Have you had a lap yet? I'd love to chat more.
 
Hey desperatelady! I've only had the one lap and this was back in March to officially diagnose my endo. Only a very tiny amount was removed from my reproductive organs and my surgeon said even if left, it wouldn't stop me falling pregnant because the endo was such a small amount. It's all over my bowel that I'm riddled with it. Why do you have to have your tubes removed in order to have ivf? I don't understand that!
 
Hi Pud! We are going thru the exact same thing. I too did a lap in march and was diagnosed with stage 4 endo. The doc says its all over my colon and has buried my tubes and ovaries. He said that IVF is our only chance of conceiving but I won't accept that and we can't afford that. He put on lupron for 6 months, I'm now at month 4 and I can't deal with the side effects of it anymore. Its too much. So after doing some resarch I found out about serrapeptase. Its an enzyme that eats up scar tissue. There are some good reviews about it from women with endo so I've started taking that with lots of prayers. My endo pains are very bad. I get them even wen I'm not having AF. I've only been taking the serra for 2 weeks so I'm not sure its it working yet. It prob will takw a little while to start idk. Oh I also have endo in my chest. I would be happy to talk more about this. Its good to kno ur not alone :)
 

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