TTC with stage 4 endo

[Pud]

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.

 

[candypanda]

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.

Hello!
I have stage 4 endo, diagnosed at 17 and I am now 22 and married ( we met at 14). Anyhoo after my 2nd lap they told us to TTC, I came off BC (depo) and I feel like rubbish!

What pain relief are you taking?

I've heard a few people with endo saying that there's nothing blocking their tubes or ovaries, but they are having difficulties getting pregnant.
I think it might be to do with hormone levels. Because I think we have an estrogen dominance a lot of the time, from what I've read. Estrogen makes endo worse as well, so it's a bit of a vicious cycle! I'm not 100% on what I'm saying because nothing ever seems set in stone with endometriosis...the research isn't great on it!

Do you chart your temp? I was using OPKs but I've found temping seriously helpful this month, because my OPKs weren't actually matching up with my real ovulation, I seem to have 2 surges and only one of them I ovulate on.

XX

 

[PiggieFarmer]

I normally don't write much here, but I had to reply...

Endometriosis is evil.

I am in a similar situation: endo with infertility, though not stage 4. Not completely sure endo is the cause, but endo works in strange ways. There is a section of the "Making Babies" books that lists some of them. But they are mostly theories: surprisingly little research is done on endo, perhaps in part because there is a "workaround" for infertility, i.e. IVF and related ART. It's not a good workaround, but apparently good enough to stall endo research.

I had laparoscopic surgery to correct my endo, at least as much as possible. Before that, I would have to take the maximum doses of both aspirin AND tylenol for several days to deal with it: it just was terrible. Since then (exactly a year ago), I have much, much less pain. In fact, the first cycle or two had NO pain.

So I can highly recommend the surgery. I had it done in Omaha, at the Pope Paul VI Institute, because they specifically perform the surgery in order to preserve fertility. There are other doctors who use similar techniques, look up NaProTechnology. That being said... I have still not gotten pregnant, despite the other treatment I have had. But at least the pain is mostly gone!

We need to spread the word that such terrible menstrual pain is NOT normal, and needs to be investigated as early as possible. I honestly thought it was normal for the longest time.

I hope that helps!