Conservative surgery or IVF - what to do ..

[SoHardToFindAUniqueUsername]

Hi all.

Sorry this is a bit long but I am essentially looking for advice on IVF vs surgery, if you can help then thank-you!

15 months of trying now. Just finished jumping through hoops to get to a NHS fertility clinic. He is fine, turns out I am the 'problem' (naturally!). Severe endometriosis with two largish endometriomas on one ovary, other one is fine. Endometriosis in the bowel, kidneys fine. Ovarian reserves look good which gives some time (both in our mid-late 30s).

In the 1st consultation we were basically given the choice of surgery, with risk of damage to healthy ovarian tissue in order to continue trying for a natural pregnancy. Or IVF - which we were too early for (I think you usually have to try for 2 years first), but he seemed to think we would be approved. We asked for time to think.

On our second appointment, we found out that the endometriosis was classed as severe. The consultant must have looked at the scans again as he said we could go straight for IVF - the endometriosis meant it was no longer classed as unexplained.

We have gone for the conservative surgery option. Mainly because it seems to make more sense to look at whether the structure can be resolved, and because IVF seems so last resort (in my head anyway), also I am sure that these cysts are causing the extreme bouts of pain I have on 2-3 occasions each year. They will drain (or remove) the cysts as they are able, remove superficial endometriosis and is anything is adhering will try to sort it and do the dye test. If we don't conceive naturally within 6 months then we can come back for IVF.

I am worried that we have made the wrong choice, and in a years time we will still be in the same situation, particularly as the consultant seemed to be slightly leaning towards the IVF. I don't really want surgery or IVF-frankly I am wimp. I realise that I am very lucky to live in a country where I get a choice at all, but this is upsetting me much more than I thought. Has anyone else been through this?

Hi,

I am not currently in this situation but will shortly be having a hycosy to check my fallopian tubes. I have thought about if they are blocked and I was offered surgery what I would do. Obviously I will discuss with the professionals and take their advice on board if this is the case. My thoughts for me are that I would probably go for the surgery despite being terrified of that sort of thing as there is a chance for it then to happen without ivf and also if it did then work there is also the chance of a 2nd child in future without further treatment. If this doesn't work the option of IVF would still be there. In my area they only offer 1 cycle of IVF on the NHS which is also a consideration. Best of luck whatever you decide.

Hey named changed for this as the detail is a bit outing.
I had a similar dilema and ended up going for the surgery. Unfortunately it did massively affect my ovarian reserve and we have had a number of failed cycles now and are considering moving to donor. I was 37 at the time, and my ovarian reserve seemed to plummet in the month before the surgery, so maybe that was about to happen anyway.
Its was a very hard decision and on some level now I do wish we had tried a cycle before the surgery. I think they say that success rates with ivf are not massively reduced with endometriosis (although I find this hard to believe!) and they now think it is best to go ahead with ivf and not risk surgery and a possible reduction in ovarian reserve. However - after my op I felt like a different person and realised I had been quite unwell for some time - chronic fatigue and pain. I remember reading somewhere when I was trying to decide that it would be better to be a healthy mum than an exhausted painful one, even if that eventually meant going down the donor road and that resonated with me at the time. Sorry you are in this position and good luck with whatever you choose.

Hi both, thank-you for taking the time to reply - very kind of you.

SoapyChoc - good luck with your procedure. I had the same thought about a 2nd child also. I am also grateful that we have 2 chances of IVF in my area, which is of course completely unfair.

rockandhardcyst - thank-you for your experience, I didn't realise that ovarian reserves could drop so quickly. Do you mind me asking whether you had major removal of endometriosis (my consultant said that would essentially involve x2 operations and a temporary induced menopause) or was it a similar 'conservative' approach. The various weird symptoms I have had for years do now make sense, and while I have had occasional excruciating episodes and am not really very keen on a sizable blood filled cyst in my abdomen (!) I am not in absolute agony every month. I am wondering if I should just deal with it and start with the IVF asap. But then they wouldn't have offered me surgery if there was no chance of a positive outcome surely :(
If you go down the donor route I really hope you have success!

I'm not really sure which option I had sorry, I don't know what they mean by conservative surgery! It does seem that ovarian reserve can drop suddenly although there is no way of knowing if that would happen to you or not. There is an endometriosis section on fertility friends that might be worth having a look at whilst you are trying to decide

sohard I don't have any experience of the surgery but just wanted to say that I've had 2 rounds of ivf and it's not nearly as bad as it seems beforehand. Success rates are massively based on ovarian reserve and egg quality which are effected by age. I think the surgery you are describing sounds a big undertaking and honestly not a conservative option when compared with IVF. It could have a big impact on your body and either the wait time, not sure it would be worth it? It's a hard decision but you could have IVF and then if those don't work, go on to have the surgery and older if it helps you fall naturally? Anyways, I don't have all the details so the surgery might be the right option for you. But please don't worry that IVF is an extreme treatment, as it's really not bad at all! Good luck whatever you decide.

Personally, I'd probably try the IVF option. It does carry risks but you might be able to freeze some embryos for later. Being in your mid to late 30's isn't great - despite an excellent reserve, half or most of your eggs will be duds already (statistically speaking). I'm not sure how long you'll need to wait for surgery and how soon after you can start trying but it can take up to a year even for healthy couples. I would only risk it if the semen analysis came back fantastic and there was a chance of getting pregnant almost immediately.

I'm sort of in a similar position so I'm grateful that you've posted. Similar length of time trying and a large, painful endometrioma. Because I'm still waiting to be seen by fertility the only thing I've been offered so far is surgery (cystectomy and endometriosis treatment). There are some interesting studies on this but some have small sample sizes:

www.ncbi.nlm.nih.gov/pubmed/27030496
www.ncbi.nlm.nih.gov/pubmed/26420658
www.ncbi.nlm.nih.gov/pubmed/27527586
www.ncbi.nlm.nih.gov/pubmed/27857046
www.ncbi.nlm.nih.gov/pubmed/28186620
www.ncbi.nlm.nih.gov/pubmed/27054965

I am leaning towards surgery on the basis that I am in a lot of pain or just really uncomfortable for much of the cycle. I also don't know what my AMH levels are and almost certainly won't know in time to decide.

IVF is a lot less of a big deal than I think we can make it out to be in our heads.

What is it about ivf that you find so off Putting?

Personally, had I known how straightforward it would be, I'd have started years ago. If I let myself, I can get quite cross with all the doom mongers who had me believing it was somehow akin to torture.

Hi OP - sorry you've been having a rough time of it. It's hard to comment fully without knowing all the detail (and without being any kind of medical expert!)

I had a similar situation - moderate-severe endometriosis and like you was told that it wouldn't affect ivf success rates. I had cysts on my ovaries but they seemed to come and go - I did have a cycle delayed at one point because of them but started the next month once they had gone.

I would be tempted to go straight to ivf. The procedure isn't pleasant but it's not that awful. For me, going through a cycle helped uncover a couple of other issues which needed rectifying - hopefully you won't have any, but if you do it's better to know about them sooner rather than later.

Also worth thinking about and finding out what, if any, changes might happen to your endo and cysts as a result of pregnancy. It might be that a successful ivf cycle and pregnancy could help resolve or reduce the endo as a result of hormone changes - in which case, win-win. Or if not you could have the surgery anyway.

Good luck whichever you decide - there is no 'right' answer in this sort of situation.

Oops sorry I didn't realise I had all these nice replies! Thank-you all!

IVF - I think I do have a bit of a mental block there. Maybe because it seems so 'last resort' in my head. But interesting that so many of you would take that as the first choice. I suspect that the consultant prefered that course of action too.

There seems to be evidence for both options given the reading I have done, as I supposed there has to be, being the NHS !

There is a waiting list of 18 weeks for either option. So I certainly have time to dither and change my mind. In our borough we would be funded for two fresh cycles, non frozen. I don't know what would happen if we wanted to freeze and fund a frozen cycle ourselves - I presume that this is allowed?