Is severe endometriosis explained or unexplained infertility?

[miss_marple]

Hi

I'm quite new to all of this :S

I've recently been diagnosed with severe endometriosis, and have two large endometrioma cysts. I'm not in much pain so have been told to keep trying to conceive and not to have surgery to remove as it may impact ovarian reserve, particularly as it involves both ovaries.

I am trying to figure out my next steps. The GP says they will refer me to the fertility clinic after 1 year of trying (so in 6 months time).

I suspect I will need IVF in the future, I haven't found much out there saying natural conception occurs a lot with women with severe endometriosis.

In my area I read the guidelines and it says you need to have been TTC for 3 years before eligible for IVF.

Is this also the case if you have a diagnosis of severe endometriosis? Does anyone know if it is considered as explained or unexplained infertility?

I'm not taking any medication to treat the endometriosis as it all acts as contraceptive so I really don't want to leave it for years to wreck more havoc!

Also I wasnt sure how the process works (I've tried googling!). Once you have a referral to the fertility clinic, do they decide if you go on the IVF waiting list or not?

Any information would be great

[Hidden]

Well, it's most likely the cause of your infertility as it has been with me - so it is Explained Infertility.

I too have stage 4 and just got a positive pregnancy test this morning after my 1st IVF round - so there is hope. I had bilateral endometrioma, 2 x surgeries, was due a 3rd surgery but cancelled and decided to do IVF instead.

So, in theory the 3 years shouldn't apply to you, you have your diagnosis now.

All the best to you. Let me know if you need any stage 4 endo and IVF advice.

[miss_marple in reply to Hidden]

Hi YellowRose,

Wow - congratulations! Not only am I happy for you but you've also given me hope

I guess I was wondering whether the NHS also view it as 'explained'. I read somewhere that if you have blocked tubes for example, then you don't need to wait for the 3 years to get IVF they will refer you straight away, but I didnt see endo on the list of explained fertility though which made me think they may see it as unexplained and make you wait.

Do you mind me asking ,did you head for IVF privately and did you have endometrioma during your IVF or have they stayed away since your surgery?

Congratulations again

[Vickal]

Hi Miss Marple, firstly you can still conceive with severe endo. I friend of mine had very severe endo (with adhesions all through her bowel and abdomen) and after a dye flush to check her tubes and some lazar treatment during a laparoscopy she conceive within a few months. I have also read lots of other success stories on the Endo forum so don’t give up hope!

I have endo too (bladder and uterus are stuck together, one ovary 90% covered and stuck to my appendix, other one 5% covered, also found endo in the pouch of Douglas) but my surgeon told me that it couldn’t be lazared as it could risk damage to my uterus, bladder etc. I have since been told that a more skilled endo specialist may be able to successfully do this. So it depends who you speak to. Did you have a laparoscopy and/or any surgical treatment?

Although the gyne that did my op wasn’t an endo specialist he was the Head of the Fertility Clinic and asked us to try naturally for another six months and then to come back if we had no luck. As I’m sure you know, the endo will spread further and may lessen our chances as time goes on.

He also asked my hubby to do two sperm samples and if these showed any abnormality we should come back sooner. Unfortunately my hubby’s sperm tests both came back with very low morphology so we got to the fertility clinic within a year of starting TTC. So you can get a referral quicker if you have other contributing factors.

It is still a slow process even after a clinic referral. We had our first appointment in July and we have been through another six months of tests before we finally got a consenting appointment for IUI in January 2015. Treatment should start within a couple of months of that. All this time we’ve been trying naturally and had no luck yet.

Every case is treated differently so it depends on both you and your partners health. Do try to get a referral sooner because of the endo. My gyne told me that in some women it spreads quicker than in others so he couldn’t say when it may become a problem to fertility. This comment is always ringing around in my head as I wonder what’s going on inside me! Especially when I have the excruciating period pain I experience every month But you've got to stay hopefull!

Good luck with your journey. Sorry to go on a bit. Hope this helps xx

[miss_marple]

Hi Vickal,

Thanks for your reply.

I'm pleased your finally getting somewhere now and will start IUI. Good luck!

I haven't had a laparoscopy - I've had several scans (and in an endo centre) and they have told me with very high confidence I have severe endo from what they can see through my scans - the endometrioma, nodules in bowel, scar tissue and adhesions. Usually they wouldnt diagnose from an ultrasound but as so much was visible, for example pouch of douglas is obliterated, they were able to. They've advised I leave the endometrioma alone and dont have surgery and continue ttc naturally and then seek help of a fertility specialist. This advice really confused me at first, but I've been reading up on it lots and am now beginning to understand now where they're coming from. Its major surgery to do involving the bowel for someone who isnt actually in pain and could make things worse and affect fertility in different ways, so they think a referral to fertility specialist when the time comes is best.

What I don't know is the state of my tubes so in the new year I think I'm going to go and get a hycosy dye test done privately - I'll drive myself insane not knowing if they're blocked or not and the GP confirmed they cant (wont?) refer me for this.

We're moving into a new region in the New Year (it'll be East of England CCG - noticed this has a 3 year IVF waiting period!) and once I sign up to new doctors I am def going to ask to proceed with the sperm tests etc and try and move this along.

Its daunting to know I'm just at the beginning of all of this, wish I had a crystal ball to see into the future and know it will all be OK!

xx

[Vickal]

I kinda understand why they have chosen not to operate if it’s so obvious it’s endo. I went through the operation just to be told they weren’t able to do anything without risking damage but I did get my diagnosis out of it. They could only see one endometrioma from my scans. When I was in recovery and the gyne gave me my diagnosis I asked him what the treatment would be and he said you need to get pregnant as quickly as possible! No drugs or anything so I’m in the same boat as you.

I think you’re right to get a hystoscopy asap. If you find out there is a blockage this may speed up your fertility referral and I’ve been told the dye flush helps clear your tubes and you’re most likely to get pregnant in the next couple of cycles after this procedure. I didn’t but I think that’s down to other factors.

It will all be ok you have to believe and keep hopeful. Just take it one step at a time. Good luck with the move! xx

[miss_marple in reply to Vickal]

Good to hear you can see their point as well. Did they tell you why they didn't remove your endometrioma? I'd have thought if they were already in there they might have removed it and adhesions etc.

We got told get pregnant quickly too - bit frustrating to hear when of course that's what you want to do but have no control over!

Great to hear flushing the tubes is a good thing. The way I see it, that test is so important to me whichever way it goes. If they're blocked, then at least I know and can advance to IVF. If they're not, then my mind is a little more at ease knowing that its still possible that it can happen naturally and I can keep trying throughout all the waiting for referrals etc.

I've been charting the last few months and do appear to be ovulating and have regular cycles, so at least that's one thing that looks OK!

xx