Stage 4 and fertility: Hi All, really just... - Endometriosis UK

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Stage 4 and fertility

Tearsinrain84 profile image
7 Replies

Hi All, really just hoping to hear some success stories I guess...

I recently had a laporotomy to remove Stage 4 endometriosis from womb, tubes and bowel. My specialist has put me on Microgynon back-to-back to 12 months to stop the endo growing back. After this we are keen to try for a baby but she said the likelihood of conceiving naturally is quite slim so suggested going on the waiting list for IVF on the NHS. I'm not sure how I feel about IVF for various reasons, and just wondered if anyone has been in a similar position and had success naturally, or has any other advice? Thanks in advance :-) Lucy

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Tearsinrain84
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debs1082 profile image
debs1082

Hi I also have stage 4 endo. When I came off the pill to try for a baby my endo became much more painful and after a year of negative pregnancy tests we were referred for fertility testing. I had another lap to see if it would improve fertility and to check my tubes (which were fine) but still no pregnancy. We were put on the IVF waiting list but continued to try naturally. The prospect of IVF was terrifying but we were both becoming very depressed, and were emotionally and physically exhausted, each month trying desperately to do everything possible to conceive only for my period to arrive. When the IVF treatment started it was scary but also gave us hope...it was obvious by then that we weren't going to get pg on our own.

I am now 30 weeks pregnant after our first IVF cycle worked! We were one of the lucky ones, ultimately IVF is just a lottery I think. For those who have treatment which is unsuccessful it must be truly devastating.

My advice to you would be, if you can get on the waiting list now. When ur ready to come off the pill see what ur doctor thinks but after 6 months if it's not happening then perhaps it's time to consider assistance. All in all I was off the pill for 2 years before becoming pregnant and having a period each month and my endo getting worse over this time has been horrendous.

Hopefully you'll not have to go down the assisted route and will have a lovely natural pregnancy to celebrate in a years time, but I think it would be beneficial to do some research and have a plan b.

Wish you all the best xx

Tearsinrain84 profile image
Tearsinrain84 in reply todebs1082

First of all congratulations! You must both be over the moon! Thanks so much for your reply, to be honest you've kind of just really confirmed what I was already thinking/expecting and what my consultant had told me.

I think I just need to get through the next year and hope the endo doesn't recurr, then take it from there. But going on the waiting list for IVF seems like a sensible thing for us to do.

All the best with your pregnancy, hope everything goes smoothly, sounds like you deserve a break! xxx

Nikeolau profile image
Nikeolau

Hi. I was told at 21 I would get pregnant naturally at my diagnosis. I had endo burnt away ( worst way to tray endo) and then zoladex injections for y months. I broke my heart every month when the dreaded period started.

At 25 I went on the ivf waiting list, hubby had his swimmers tested and obviously he was fine an plenty of so a down to me. I eventually caught whilst on the waiting list, I had Litrally given up all hope. I had a miscarriage but 3 months later I was pregant again and 8 days after my 26th birthday my boy was born via emergancy c section. Had lap and could fitted to ease endo symptoms after having but it made me worse as it has dropped in my uterus and was tearing at my walls. Had more zoladex and fell pregnant just b4 I was to have moth 5 injection. I was unwell all throughout the preganacy and my girl was born with 3 kidneys but is 4 years old and doing fine. Don't give up hope and if you do have a chance of ivf take it. You may never get another opportunity . Wishing you all the luck. Sending hug your way xoxox don't give up xxxx

Tearsinrain84 profile image
Tearsinrain84 in reply toNikeolau

Thanks so much for sharing your story. I have a few friends and family members who have been through IVF so I'm going to go on the waiting list and get all the info I can from them. Just praying we get lucky naturally! xx

Both your stories give me hope as hubby and i have been trying to be pregnant naturally for the past 7 years and,had two privately funded failed IVF in between.

I'm currently on injections and waiting for my surgery date to come through.

My specialist and Gp are communicating and are going to put me on the nhs waiting list once the surgery is done.

I hope I get lucky soon.

Tearsinrain84 profile image
Tearsinrain84 in reply to

Good luck with your surgery, I pray it will go smoothly for you and you'll have some luck getting pregnant afterwards. I'm recovering from a laporotomy at the moment and the only advice I would give you is to take your recovery one day at a time, don't do too much too soon! xx

Tearsinrain84 profile image
Tearsinrain84

This is really interesting, I'm really keen to explore homeopathy and complementary therapies/medicines so thanks for the info. My consultant said there was nothing I could do to help lifestyle or diet-wise, but if there's even the slightest chance I think it's worth trying! Thanks for your encouragement :-)

P.S. Yes, the laporotomy was to cut out the endometriosis. It's a bigger op than a laporoscopy which I think they tend to do for Stage 1 or 2.

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