Stage 4 endometriosis and trying to get pregnant

[Pink23-8]

I have stage 4 endometriosis. I have had 4 laparoscopies. Most recent laparoscopy was to remove one fallopian tube, adhesive scar tissue, chocolate cyst. I am 37 years old and have a low amh 0.26. I have had my first cycle of ivf on nhs which resulted in a negative pregnancy test. I am now in the preparation of starting cycle two. This time going private as nhs only funds one cycle. I now have fluid in the uterus cavity which i believe is caused by a build-up of fluid in the fallopian tube that's left and causes fluid to drain into the uterus, so am waiting to have another laparoscopy to rectify this before completing cycle two IVF. My worry is, will I have good enough eggs that will be good enough embyros to transfer, if not my only other hope is possibly donor eggs. Endometriosis is such a horrible disease that tries to take over your whole life. It's so difficult to try and stay positive but I guess we most still have faith, hope and pray. If it's meant to be it will be. I wish everyone going through this journey all the very best. It would be nice to hear success stories from anyone who has a similar or same situation.

[Hidden]

Hi, so sorry to hear you have so much to deal with. Just wanted to say a friend of mine had horrific Endo and also had 4 laparoscopies along with other surgery and between IVF cycles had to have cysts etc stripped each time, anyway she now has a 6 month old baby and was 38 when she got pregnant. It did take her a few rounds but I am not sure of her clinic (they didnt flex her treatment and one cycle even did ET when she had already started bleeding!?) so I don't think it necessarily has to take loads of cycles if you are under the care of someone who listens etc.

Since pregnancy her Endo has been substantially less (so far) with much less symptoms. It can happen so think positive and wishing you lots of luck x

[Pink23-8 in reply to Hidden]

Thank you Daisy1245 for your kind words, it's so lovely to know that there is hope. It's a tough journey but I'm holding on, staying positive.

[emmab178]

I'm not sure if the stage of my endo because a general gynae did my lap and basically ignored all rcog rules but he did remove a tube and ovary due to a cyst. So it's probably severe as i lost the ovary.

I had an amh of 8 at 37 with one ovary and went straight to ivf 6 months after my lap. Didn't have any cysts or fluid etc and got pregnant on first attempt at icsi.

Endo is so brutal to women's lives and so little known about it.

I think there's been success stories of low amh. Maybe talk with the clinic and see what they say. My friend did ivf unsuccessfully in London but the consultant was wonderful and said if she was his daughter he would tell her to do donor eggs. She did and has a little boy with some frozen embryos left over x

[nm86]

Hi, I completely feel your pain as I have stage 4 endo and have several laparoscopies. My last removed one tube and also I've had one ovary reconstructed - it is such a horrible disease. My AMH is low too at 2.3 and I was advised by my IVF clinic to take DHEA prior to egg collection. I also took Vitamin D and ate as healthy as I could but within moderation. I was told by my clinic to be prepared that we may not get any egg's at all but I managed to get 8 and 3 made it to blastocyst. Our fresh cycle didn't work for us but I just managed to get a BFP with a frozen egg and we are now waiting for our viability scan. Please have hope - it can work for us suffering with endo! xx

[Pink23-8]

Hi nm86, Thank you for your reply and congratulations, that's wonderful news. I haven't done egg collection yet but have started the injections process. I had a scan this week and they can see 3 follicles so far, so I'm hopeful. Like you I'm also taking DHEA, have been for about 6 weeks now along with cod liver oil, multivitamins and 600mg coq10 daily. Really hoping my egg quality will be good . How long did you take DHEA. I was told you should take it up to 6 weeks before ivf process? Thank you again. I will stay positive.