Prioritising fertility

[MediocreMind]

Hi,

I posted this on the endo uk forum but I know lots of ladies on here also have experience with endometriosis. I was diagnosed with endometriosis in Feb and I have my next appointment with my consultant (who is also the lead of the infertility clinic) on Friday which I think and hope will be to discuss a plan of action. I let him know previously that fertility is my priority as we've been ttc for almost 2 years now, yet when I spoke to the endo nurse she said they'd want to deal with the endo before even starting to look at my fertility. So following different information from different medical professionals I ended up doing basic fertility testing through my GP who then sent off a referral to a different hospital. These tests showed I have raised TSH, I'm not immune to rubella and my husband has less than 1mil sperm count. Now we know we also have male factor fertility issues it seems likely we'll need to have ICSI.

I guess I have two questions, if they operate to remove the endometriomas from my ovaries, won't this risk my ovarian reserve? Secondly, as endometriosis can grow back very quickly, should we not be timing the surgery to be right before ICSI? I haven't been referred for ICSI yet and so will have a wait for funding approval and then a wait to be able to start at the IVF clinic, so I'm concerned it could all grow back before we even get started.

I'd really appreciate any advice or similar experiences.

Thanks,

MM

[DianeArnold Partner Nurse Fertility Network UK]

Hi Medicremind. Endometriosis is a strange beast! To put it crudely, you can look inside someone and they are full of it, then 3 months down the line you can't find it! I'm hoping that if you do decide to go ahead with a laparoscopy, they will be able t gently laser it away. They will be very aware of the way they need to handle your ovaries, so listen to your specialist and trust him/her. Ask your specialist those questions and be guided by what is advised. I do have a list of questions I could email you in confidence if you want. most won't be appropriate, but there may be a few you could ask. Email me at [e-mail] if you want them. meanwhile I wish you huge luck with any decision making, and of course for success. Diane

[MediocreMind in reply to DianeArnold]

Thank you Diane. I've sent you an email and am certainly trying my best to tame the beast!! X

[Lizzielizzielizzie]

A laparoscopy and removal of endo around ovaries was what made all the difference to my friend. She’s on her third natural pregnancy now (though she didn’t have the other issues).

If I were you I would get a copy of the fertility related medical notes and take them with you to your next appointment with the endo specialist.

[MediocreMind in reply to Lizzielizzielizzie]

Thanks for the advice Lizzie. I'll definitely take all our test results so far with us so the consultant can also consider them - I hope! X

[Hidden]

Hi Hun, I had surgery to remove Endometriosis mainly from my ovaries. The plan was to follow on with IVF a few months after. During the months in-between I was put on Zoladex injections to hopefully stop the Endometriosis returning before starting IVF. I did concieve naturally after stopping the Zoladex though but miscarried. I had further surgery & concieved naturally again but again miscarried. After that loss my Endometriosis grew back again but the consultant said more surgery would be detrimental to my fertility. Like Diane said, when I went to my fertility clinic in January somehow I had only one small cyst which the Dr said wasn't an issue so I don't know where the 8 to 10cm cysts went! The only changes I had made were following the Endometriosis diet & taking Bee Propolis. Wishing you lots of luck xx

[MediocreMind in reply to Hidden]

I'm so sorry to hear about your losses. I've been trying to follow the endo diet but I'm not yet following it strictly. I'm also taking serrapeptase and haven't heard of Bee Propolis - I'll have to look that one up. I really find it amazing how much of a difference the diet makes for some people, I really need to figure out my breakfast and lunches!!

Good luck to you too! X

[Hidden]

Hiya. My consultant also had the endo first, fertility second mindset - my partner & I have been trying and failing to conceive for just coming up to three years.

After my lap, the surgeon gave me a 3-6 month window in which she expected me to fall pregnant - she said this is the amount of time she would expect an individual who's fertility is affected by endo to fall pregnant within. Unfortunately for me this has not been the case, however I'm presuming that my case is outside the norm and it's always worth trusting the specialists; I would go back to them with a list of questions.

[MediocreMind in reply to Hidden]

I have read that you're more likely to get pregnant right after a lap, although we'd be very unlikely to naturally fall pregnant because of our male factor issues.

I'm gradually building a big list of questions - I'm sure he'll be kicking me out the room before I'm done!! X

[emmab178]

I'm the opposite to the above replies which is going to complicate matters! But then endo is so complicated in itself.

I had a mass on my ovary. Unfortunately I went private where a 'specialist' said he would laser away the endo and aim to preserve my fertility (I was 37). He asked me to sign a consent allowing him to take the ovary if required. Needless to say I woke up with only one ovary. We immediately signed up for ivf and whilst on the bus waiting list I went to see two more Drs. Again a 'specialist' in endo who told me a hystectomy would cure me of endo (complete rubbish). But then i found an endo forum who encouraged me to go to a bgse accredited surgeon (one of the best for endo in the country). I talked with him and he said if the remaining tube was ok then there should be no reason not to fall pregnant naturally and a hystectomy wasnt needed.

I didn't have time to redo a lap for endo with this bgse specialist so went straight to ivf.

My 38 year old ovary produced 5 eggs, 3 mature and all 3 made it to blast. The highest quality embryo is currently 9 months old and looking to start an fet for our frostie in the new year.

So take that endo!

Please ensure you are seeing a bgse accredited surgeon if possible (on the nhs they only see severe endo patients). The people that call themselves specialists can do more harm than good RCOG says if they find severe endo then only someone with bgse accreditation should touch it. My 'specialist' should have seen the endo and left it alone. I will never know if that ovary could have been saved but i know now that he shouldn't of operated on it.

Oh during treatment we also found we had male factor infertility aswell.

[Lizzielizzielizzie in reply to emmab178]

Can’t believe you’re getting ready for an fet Emma. Will it be George, Bungle or Freddie?!

[MediocreMind in reply to emmab178]

Congratulations! I'm so glad that after everything you went through you got your baby! I have to say though that everything you went through beforehand are my fears. I'm guessing that I can't refuse to sign permission for them to take an ovary if they think it's necessary.

I'm being seen at a provisional bgse centre, although I'm not sure if that really counts for anything as it means they have less experience than a fully fledged centre. I also think I'd feel awkward about asking to be seen elsewhere. I think I'll have to see how it goes on Friday and suck it up and ask to be seen at a bgse centre if I don't feel confidence.

Good luck with your fet! X

[Birdboy1]

Hi, my ivf doctor was the one who discovered my endo, even after years of visiting my gp with no diagnosis. She also was a endo doctor. So we decided to pay privately to ensure she was the person who removed the endo and it meant that it wouldn’t do anymore damage if I got it removed as quickly as possible. Also I felt she knew are struggles so would be super careful in the operation to ensure as little damage was done as possible.I know going private isn’t the option for everyone but it was what we felt we needed. Then within 3 months I was starting my first round of icsi. Our doctor said she wouldn’t start our ivf journey until I had had the endo removed. I hope that helps. Good luck xx