Endometriosis, IVF & Fertility

[DaniWheel]

Hi all,

Not posted before but found this forum so resourceful!

After nearly 5 years of not getting anywhere with Dr’s & consultants in 2018 I paid to get a diagnostic laparoscopy privately. I had a endometrioma cystectomy, endo was found in other areas including pouch of Douglas. This was ablated not excised. I can’t remember what stage my consultant said it was but in between stages, maybe 2-3? The endometrioma returned within 3 months the all other symptoms were back not long after that. Now, there seem to be even more symptoms than before too.

I have never fallen pregnant in my lifetime, we’d been trying for years prior surgery and hoped it’s would have post surgery but it didn’t.

I pushed to see a fertility specialist on the NHS and after seeing many clueless doctors I finally saw someone that sounded like they know what they were talking about. I wanted to know if I should pursue excision surgery before the IVF route. This consultant thought that wasn’t a good idea, wanted to preserve fertility and push quickly forward with IVF.

I followed him to a private fertility clinic in Essex. I made it very clear that because of countless terrible experiences I have issues trusting consultants and that I really only wanted to be treated by him if I was going to follow him there and pay out so much money. Prior to the first round of IVF I had an endo flare up, I haven’t had this in over a year, Pain was centralised, high up and gastric. I called the clinic to ask if I should go ahead on this cycle or wait but they didn’t really answer me, just said if I felt ok then it was down to me? We went ahead hoping it wouldn’t affect things, 14 eggs collected, 7 fertilised, 3 made it to embryo stage. Was left with 1xA 1xB 1xC. The A was transferred, my test date was 25th October.

On 22nd the same endo flare up started again, called the clinic, spoke to the nurse and consultant who couldn’t really help and told me to get to hospital if it worsened. The next night I was in agony, never had anything so bad in my life but no sign of period. Went to A&E they found infection in my blood but couldn’t pin point where this was coming from, high white blood cell count and very high inflammation marker all pain was high stomach, contracting type pains and lower side shooting pains, couldn’t walk or lay flat. Wanted to prescribe oral morphine but needed to check with clinic first, my A&E doc spoke to the clinic directly on the phone. The clinic left it to the doctors discretion to prescribe..!

All pregnancy tests done 24/25/26th October were negative, then period came.

I was not treated by the consultant once that I saw on NHS. Also, to date I haven’t heard from the clinic considering they know I was in A&E I am so disappointed by.

I don’t know if I should have gone with my gut feeling and perused excision surgery first and also don’t know what the usual protocol for IVF patients with endo is?

Is there such a things as a fertility clinic specialising in endo? I can’t find anything!

I knew it had to be impossible to fall pregnant via IVF if it’s not happened prior to surgery and it’s never happened before that. I was right! I always thought it was an implantation issue too but never had bloods tested for that as my comments were dismissed.

Is there anyone out there with similar circumstance? Most with endo know that can at least get pregnant initially but I’ve never even had that.

Just feeling so low and I’m am not that kind of person at all.

Thanks for reading my long blabber xxx

[wanwood]

I received a diagnosis of endo in my early 30s around 18 months into trying for a baby, after a large endometrioma was found on one ovary. Never once had a positive pregnancy test result in my whole life at that point. I had the endometrioma out but they couldn’t do everything that needed to be done at that point. The gynaecology consultant said I could either go straight to IVF or have more excision first to remove endo in pouch of Douglas, retrieve stuck ovary, remove all adhesions etc. He felt on balance that surgery would help. We kept trying naturally for 6 months after the second op unsuccessfully and then went to IVF via a NHS clinic, which was successful. So surgery did help my IVF, I believe. But I was referred for it through the gynaecology route rather than through the fertility consultant. That’s my story for what it’s worth! I’m sorry you’ve had such a tough time, infertility is So difficult and like nothing else. xxx

[DaniWheel in reply to wanwood]

Thank you for your reply! I know my message was a lengthy one!

May I ask how long ago this was? I’ve consulted an excision surgeon.. the panic of time is unreal. I’m 34 and feel the clock is ticking away!

I wish I could trust more but as we are constantly let down it’s just impossible.

It’s been 5 days since I was in hospital and I’ve heard nothing from my clinic, at least they have all our money though...

[wanwood in reply to DaniWheel]

I was 32 when we first started trying for a baby, 34 and 35 for the operations and nearly 36 when we started IVF just over a year ago. There were delays at every stage on the NHS. Hope that helps!

[DaniWheel in reply to wanwood]

That’s ok, we have had zero NHS help, we’ve had to find everything ourselves.. leads you to think you’ll get better care which is not the case.

Sorry one more question, what IVF protocol did the put you on, were bloods taken to measure inflammation and white blood cells taken before or during the cycle? Mine were off the chart with this flare up, I never have flare ups.

[wanwood in reply to DaniWheel]

I was on Prostap for 9 months between laps so my ovaries were very suppressed before starting IVF. My periods eventually returned but the consultant was still concerned. They put me on the short protocol, anticipating a poor response. I don't think they measured inflammation. I found the drug used to prevent premature ovulation (cetrotide?) did noticeably reduce inflammation and bloating once I got to that stage.

[DaniWheel in reply to wanwood]

Thank you for your responses. I wasn’t offered any of this..

we will be approaching the clinic and will raise some of these points. Thanks x