Severe Endo & adhesions - Go for further surgery, or straight for IVF?

[Pjsaredaywear]

I have recently had a laparoscopy to remove an endometrioma, and they discovered I have severe endometriosis with lots of adhesions. During the lap, they didn't remove any of it because it was so extensive. But they did a dye test and found both my tubes were clear, and the bits of my ovaries that they could see looked healthy.

A few hours after my surgery, one of the doctors (but not the consultant) came to explain their findings and said that I should consider going on a contraceptive injection for 6 months to allow the endo to settle, and that I should consider further surgery to treat the endo and adhesions. I immediately said I didn't want contraceptive, because ttc is my priority, but to be honest I wasn't really in a fit state to be making decisions a few hours after surgery.

I'm seeing the consultant next week where I expect he will outline the same options for me and ask me what I want to do.

My number 1 priority is to conceive. The endo / endometrioma pain was bad, I had occasional bouts of severe disabling pain (which have happened 3 times over 18 months), but other than that the pain was niggling chronic pain which I can live with. I get severe period pains for 2 days each month, but again, I can cope with that if they are a means to an end.

I have been ttc for over 2 years, and I'm 37. I'm terribly worried about my fertility and time running out and I'm wondering whether further surgery will just push me back whereas I could just go straight for IVF.

What would you do? Can anyone offer any advice?

[DizzyMerry]

I had severe endo which was diagnosed by a laparoscopy and had the same experience as you did only my tubes were closed by the adhesions. It was too extensive to be removed so I had a further op to remove it all. Was then put on zoladex to stop my periods whilst waiting for IVF referral but conceived naturally just after the initial consultation. I had to have a further op so that my tubes could be opened but in hindsight I wouldn't have gone for the zoladex and just continued with ttc. The side effects of zoladex were dire. It depends on how you feel about the endo but I would have it removed and then maybe continue to ttc or go straight to the IVF? There is a chance it could come back yes, but that could happen even after the injections when your periods return or at any time in the future. We are currently ttc#2 but I have started acupuncture and the lady I see also has this condition so knows what she is dealing with.

[Pjsaredaywear]

Thank you for your reply Dizzy

How long did you wait before your second op? Did they do it quite quickly after the first?

Did they recommend removing it all before TTC? As my tubes are clear, I'm not sure what benefit removing the endo would have for my fertility. It doesn't cause me too much pain and my periods are normal (although very painful).

And do you mind me asking what were the side effects of the Zoladex? I'm not keen on stopping my periods for 6 months, because I don't have a lot of time to ttc.

Good luck with ttc#2

[DizzyMerry]

I waited about 3 months for the second op. I also had an 8cm cyst on one of my ovaries so mine really did need removing if I was to get pregnant. You can often have endo with no symptoms at all. They do like to remove it though as sometimes it can alleviate painful periods and also when dealing with ttc issues as my consultant said it "could improve chances of pregnancy". However, as your tubes are clear I would ask your consultant about the benefits of removing the endo. As I said it could recur at any time so you're right about thinking about the benefits.

I experienced severe anxiety on Zoladex and some episodes of depression. It was an awful time and with hindsight I shouldn't have agreed to take this.

[AttilaTheMeerkat]

My tubes were also clear but my uterus was covered in endometriosis deposits. It was removed surgically via a laparoscopic type op. I was originally told after the birth of my child that I would need more surgery.

You really need to see a highly skilled gynae surgeon and preferably one with an interest in endometriosis as well.

I would try and seek a second opinion but if I was facing this I would be talking to them about surgery rather than zoladex. Also if you have adhesions, surgery would be the only way to remove those. Drug treatment would not at all address that particular problem.

[Danaust]

I was also diagnosed with severe endo as part of exploratory laparoscopic surgery to determine the cause of my infertility. Unlike you both my tubes are almost completely blocked. Our doctor at the time said my chances of natural conception were very low, but possible. Not wanting to wait ( I was 35 at the time) we commenced with ivf 2 months later. I am very lucky to have a 28 month old dd from that cycle.

Have you had all the blood work done? Eg fsh, amh and antral follicle count. These are all indicators of your fertility. I am assuming this was done prior to your lap...If not, I would push for all of these so you can make an informed decision concerning your next steps. You don't want to waste 6 months if you don't have to. If I were you would start exploring ivf- I think it's best to be informed about all of your options and go from there.

[Pjsaredaywear]

Thanks everyone for your replies. There are so many interesting stories, it just drives home how many different ways endo can affect people.

I'm going to ask the surgeon what would be the benefits of further surgery - I do have adhesions everywhere, and endo all over the place. Some relief on my monthly agony with my periods would be good.

However, I'm really not keen on the idea of drug treatment. I've suffered from depression before, I really don't want to bring it on again or put my ttc on hold for any length of time.

The surgeon was a Gynae-Oncologist specialist, because my blood tumour markers were raised so they suspected ovarian cancer (but it was clear). Perhaps they'll hand me over to an endo specialist now, I don't know, but I have full confidence in the two gynae surgeons I've spoken to so far.

I did have some early blood tests right at the start of ttc, day 3 & 21 tests, which did show some dodgy results. I think the next step (and what I will push for) is referral to the fertility clinic where I will be set on the right path.

I'm about 90% recovered from my lap 2.5 weeks ago, and the thought of going through it all again in a few months (if that's what happens) just makes me feel sad and exhausted. The thought of IVF frightens the hell out of me. But at least we'll be doing something.

[Danaust]

It does take time to recover from the lap-I was surprised by the amount of pain afterwards too. What a relief for you to be given the all clear for cancer-I imagine that must have been hugely stressful.

Re ivf it is nothing compared to the lap physically-I was also scared but the reality, for me anyway, was not that bad. I did all of my injections by myself ( and I hate injections!!) as my husband was o/s for work. If anything after trying for so long it actually felt good to finally be on the path to having a baby. I would say the hardest part is the emotional element particularly after transfer in the 2ww waiting to find out whether it worked or not...that I found really stressful.

[PJsaredaywear]

I saw the consultant this week, thought I'd give an update for anyone else who might be in the same position.

It turns out that my endo is so severe, and my adhesions so extensive, that further surgery is not considered an option as they said it would be too dangerous. I have a 'Frozen pelvis' which means everything is stuck together and distorted - surgery could risk damaging my bowel, bladder, ovaries.

The good news is that my tubes were clear and the ovaries looked healthy. I have regular periods, like clockwork, so that's also a good sign that things are working ok.

So my options are medical treatment, of which there are several options, all of which are contraceptive. Or do nothing. I've opted to do nothing, keep TTC and they've told me that if nothing happens in 6 months I'll be referred for IVF.

I'm actually happy with this decision, because it means there are no further delays for surgery, just keep trying then move straight to intervention if trying doesn't work.

I swing from feeling happy to feeling a bit stunned, but I'm ok.

[amalfitana]

Hi @Pjsaredaywear how are you doing? Apologies I know this thread is 6 years old but I would love to know how you got on in the end. I am in a very similar boat right now.