Not sure what to think anymore

Hello Ladies 

Sorry for the despondent tone...we had our follow up this week after both recent diagnosis of endometriosis and failed ivf cycle soon after.

I knew the endo was bad post-op but I'm feeling really upset after seeing the letter the consultants sent to my GP which confirms Stage 4 endometriosis, possible Hydrosalpinx, frozen pelvis...this is accompanied by adenomyosis and what seems to be fibroid type growth at back of womb. I knew about the endo and adenomyosis, and remember the doc saying the morning after the op that one of my tubes was pretty badly damaged. But the frozen pelvis was a revelation and I think the realisation it is stage 4 is difficult to acknowledge. The letter noted it was a very difficult dissection due to the endo and quite a bit of blood was lost.

At the appointment our consultant explained the ivf process and how endo may have resulted in poor quality eggs and therefore the failed ivf. My partner questioned if the Zoladex I was treated with and ivf so soon after surgery might have been a factor but doc didn't think so. 

I genuinely do not know what to do next. We can try to conceive on our own for a couple of months, arrange a scan to see if endometriosis has returned and if still needed, arrange a second cycle of ivf which we'll need to self fund. Doc seems positive we can try again.

On reading around here last night though, it seems Hydrosalpinx can also adversely affect both ivf and implantation!

I worry we really are up against it. I'm so angry I went for years and years with repeated visits to doctors about my periods, exhaustion and all the rest and this is where we are now at age 40 with my insides in a mess. I am feeling pretty depressed and don't know what to do. Sorry this is so long.

13 Replies

On a more positive note, I've got a good ovarian reserve still, which doc was happy with 'given my age' - here was me trying to deny I'm in my forties too ;-)

Aw so sorry to hear your news, don't know what to say really other than good luck in the future, I take it you are under a specialist in a bsge centre???

Thanks very much Tboag X Bsge centre will be next for us I think - we're in Scotland, centre is in different city from where fertility treatment and endo surgery took place, just need to check how I can get a referral - bsge site said it would need to be from a gynaecologist as the centre is outwith my nhs locality. Think I'll give them a call and check though.

I'm not sure how it works in Scotland, but there is a lady on here called Lindle, look her up, she is very informative, and will offer you help if you struggle, xxx

Thank you Tboag - I'll do this, fingers crossed we can get somewhere X

Sorry to hear your rubbish news :( x

Thank you Jade X I've been reading around here more and despite the odds a few women in a similar position have been lucky enough to conceive. My partner is being really positive - we'd never have known about the endo had we not been referred for ivf, at least we've got an idea what we're dealing with now X

Sorry to hear this, sounds like it's been difficult. I would definitely recommend going to a BSGE accredited centre. I had stage 4 Endo and have had 2 ops and the second was at an endometriosis centre and the skill and knowledge of the nurses and surgeons was brilliant. The centre I was referred to was 4 hours away but am so glad I went eventhough the travelling was difficult at times.

No need to apologise, what you're going through is intense and stressful both physically and mentally - you're more than entitled to get your feelings out and everyone on here will be very supportive xxx

Don't give up hope - I have had 4 ops for stage four and have concurrent adenomyosis as well - told no chance and conceived naturally.

The best thing we did was bbt tracking - I couldn't have sex often due to pain so thought a good idea to be accurate with timing. What I discovered was my cycle went from 23-29 days and I ovulated between day 12 and 21! Hence adhering to 'textbook' was never going to work for us. If you haven't tried it give it a go. It can also help to diagnose implantation issues, corpus luteal defect etc etc so well worth it. 

I would also highly recommend fertility acupuncture, yoga for relaxation and the Endo diet - fab for me, hubby and I both cut out alcohol and went on pregnacare too. Basically throw everything you've got at it from multiple directions - our thinking (whilst waiting for Ivf to begin) was that we'd know we'd tried everything and as a plus it kept us busy and healthy!

As for ivf, I am no expert but the stats I've read were something like 33% chance of success so def worth another go. Keep reading all you can and remember to give yourself a pat on the back and be good to yourself xx

Hi Carrie, I am in a very similar situation as you , I had surgery for endo followed by a failed IVF cycle last year, severe endo , frozen pelvis , adenomiosis, hydrosalpinx , the lot. I am a couple of years younger but my ovarian reserve is rubish. I don't have much advice but I do know how you feel! My hydrosalpinx was not treated for my first IVF cycle but currently waiting to get it removed/ clipped before the second cycle. Have they done something about your hydrosalpinx? I was told it could reduce implantation up to 50% 

Thanks so much everyone XXXX I really appreciate your help and advice! This site had been really invaluable in its support at such a worrying and overwhelming time. Huge, huge thanks to all of you. 💗

Shehulk I am really sorry though to hear that you are in a similar position, but it sounds really encouraging that they are going to treat your Hydrosalpinx ahead of your next cycle - I will keep everything crossed and more for you. I would never had known about the Hydrosalpinx had my partner not asked for a copy of the GP letter then coming on here to find out exactly what it is. 

Going to get an appointment with my GP next week hopefully to try and get the referral to bsge sorted and get this Hydrosalpinx checked out. 

Meanwhile we've been cleaning our diet up, cutting right down on sugar, yeast, cows milk, processed meats and red meat as a start. Making some enquiries into acupuncture, one place also offered Chinese herbs but worried to add these into the mix, will keep on enquiring.

Watch this space 😘 Thank you so much XXXX

So sorry to read your post. Endometriosis completely destroys lives and way to often women are dismissed and left diagnosed until the damage is completely irreversible. I too have stage 4 endometriosis which has left me infertile. It's still early days but I am 9 weeks pregnant following an IVF cycle so please don't write yourself off. There is still hope.

As a side note I read in one of your previous posts that you have Hydrosalpinx! I don't have it but I was told if I did then they would want to remove both my tubes before trying IVF as it improves your chances of success. It might be worth doing some research/following up with your consultant.

Take very good care of yourself. xx

Thank you so much for this 💕 And absolutely huge congratulations to you on your pregnancy! That is really brilliant news, you take very good care of yourself too.

This is a good point regarding the Hydrosalpinx - I'm in Scotland where the referral to a bsge endometriosis specialist can be tricky, but I'm going to plead with my current clinic when I see them next to please refer me to the bsge to try and get this sorted out.

Thank you so much...wishing you all the very best 💜 X X X X

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