IVF with endometriosis and polycystic ovary

[rachelb1]

Hi everyone,

I am new to the forum and hoping someone can help and have some advice for me..

I am 32, have been TTC with my husband for 2.5 years, we've been to the docs and had all the blood tests, HSG etc done. All levels look ok, tubes not blocked and I have good egg reserve. This was through the NHS and diagnosed us as unexplained fertility.

So we looked into IVF privately (as our borough has suspended IVF on NHS) and decided to have a transvaginal ultrasound scan and they found out I have a polycystic right ovary (not necessarily PCOS) and left ovary is close to my uterus and has signs of endometriosis.

We have been given a couple of options by our gynaecologist:

1. Go through NHS to get endometriosis properly diagnosed and then treat with surgery - waiting list as ever is long (up to 6 months), then try and conceive naturally.

2. Go through mild IVF whilst go through the motions of number 1.

Has anyone been in this position and gone through IVF with success at all?

Thanks so much for reading and hoping you can help!

[E_05]

Hey, welcome to the forum! I have endo and PCOS so don't ovulate - the diagnosis came as quite a shock to me as I have regular periods but I now know are anovulatory.

I had a laparoscopy nearly 3 years ago, they drilled my left ovary, cleared some of the endo and made sure my tubes were clear. I know it feels like a long wait but it's something personally I wouldn't of avoided having, I think it just gives you a clearer idea as to what is exactly going on inside which can help with further treatment. I have gone on to have further treatment and can't yet offer a story of success but all I would say it don't give up hope, good luck on whatever you decide xx

[rachelb1 in reply to E_05]

Thank you E_05, wow that must have been a big shock to you I really hope the further treatment works for you too, fingers crossed x

Is the laparoscopy safe? I heard one of my colleagues have problems I think with endo and that they had burnt and damaged too much of her ovary and that scares me!

Also the long wait is heartbreaking as we've been trying to conceive for what seems like a lifetime and then another 6 months plus to wait is hard to hear. But will take your comments on board and try and get the ball rolling with our doc x

[E_05 in reply to rachelb1]

Thank you, I fell pregnant last year after my first cycle of IVF but miscarried so like I say there's always hope.

I actually found my endo was better after my laparoscopy - I guess a lot of it would come down to making sure you've got a good consultant. I was also told the only way to truly diagnose endo is through a lap so even if you went down the route of exploratory surgery you would still then know what your dealing with (if that's what you wanted)

I totally understand about not wanting to wait it really is a tough and gruelling part of this journey, hope you make the best decision for you Xx

[abcgirl in reply to E_05]

I'm just curious how you know you don't ovulate even if your periods our regular? I always assumed if you're regular that's a sign that you ovulate. I also have polycystic ovaries (but don't have the other symptoms to be diagnosed with PCOS) and my doctors never thought that was a concern sing I had regular (in my case 27-29 day) periods.

[Lynnr54 in reply to abcgirl]

The blood tests they do test your hormone levels and they can tell if you've ovulated or not. I've got mild PCOS, by which I mean I ovulate regularly (though not necessarily the same time each month) and don't have any of the awful side effects but my ovaries are polycistic and my hormone levels are usually on the borderline for what they would start to be worried about from a fertility perspective.

[E_05 in reply to abcgirl]

I didn't know until I went to my doctor about not being able to conceive. As Lynnr54 said numerous blood tests shows I don't and even when I was monitored on clomid I didn't either. I think it even baffles my consultant as to how I have regular periods each month but am not ovulating. But looking back now Im more in tune with my body I never get any ovulating pains, don't get any symptoms which would indicate my hormones are working 'normally' for a period x

[abcgirl in reply to E_05]

Oh okay thanks. I feel like I'm always on the lookout for reasons for our infertility because at the moment we are unexplained. I'm fairly sure I ovulate every month which frightens me because whatever is failing naturally each month might not be overcome by IVF. Can only wait and see.

[E_05 in reply to abcgirl]

Definitely I can understand looking for answers, you could always ask them if that's something they've tested.

[abcgirl in reply to E_05]

I've had Day 21 progesterone checked which showed ovulation and had about 2 u/s scans that showed a corpus luteum. I do feel ovulation pains some months and always get positive OPKs with a rise on BBT after. So I don't think ovulation is the problem. It's puzzling then why it doesn't work naturally. 🤞 nothing serious gets found during IVF. Thanks for your insight!

[Shannon1400]

I would get the endo sorted first so that you know that you have a full bill of health before trying. X

[Mrsjj]

I'm sure you are so worried about being labelled with all this potential things and I remember trying to google everything. If I can be honest, you do have time on your side and I would get endo treated first, sounds like you have every chance of conceiving naturally if you do which is an easier option in the long run than spending £5k plus on ivf which has a low success rate. 6 months seems long but it really isn't in the grand scheme of having health treated and conceiving a child. Endo isn't the end, my friend is about the have her third baby post endo treatment. Get your name on the NHS list even if you decide different just in case. Good luck with whatever route you take x

[Linda78]

It is all so complicated isn't it! I would say that if you didn't get a thorough check over at one hospital (as they should have provided a trans-vaginal ultrasound) you could see if you can be referred to a different hospital that might have more experience of dealing with fertility issues...we were with one hospital for over 3 years who repeatedly just said to push on with IVF and ignore the endo due to my age, we then got pregnant naturally and miscarried and only when I went to another hospital in an emergency when I miscarried did I then get assessed by that hospital who said that they would never have let me go forward for IVF without having the endo treated due to the severity as we would have had such limited success of conceiving and then keeping a pregnancy.

It took another 1.5 years with that hospital to have the operation (lap and re shaping of uterus) and then to proceed with IVF due to a long waiting list but we are now 26 weeks pregnant so (as long as he's ok - still worry all day every day) it was worth the wait in the end...it can seem such a long and convoluted journey (I was 33 when we started TTC and am now 39!) but you need to make sure your body is in the best condition possible and if you get an answer you're not sure about, be pushy and ask for a second opinion or for a referral to a different consultant etc. I also spoke with endometriosis UK who were really helpful with advice about treatment options. Wishing you all the very best in your journey x

[rachelb1 in reply to Linda78]

Oh wow congratulations! So pleased you are on your pregnancy journey

Sad that not all hospitals/consultants work in the same way though and how they can miss things, it wastes so much time!

I had the transvaginal scan where they said right ovary is polycystic and left ovary is close to the uterus and looks like endo (although I would have to get it checked which would mean going back through my GP etc I guess to get the laparoscopy)

Thanks for the recommendation I will see what I can find on endometriosis uk x

[Linda78]

Hospitals and different nhs trusts really don't seem to work in the same way - I honestly couldn't believe the difference from one hospital to the other...but you do still have time very much on your side so I would push for more testing as much as you can so you can work out the best route for you - also when you get dates through and they are weeks/months away you can call regularly and ask for any cancellation slots - I never even realised we could do that so think that contributed to the years of seemingly wasted time! Really hope you can get referred quickly and you can get on your journey xxx

[rachelb1]

Thanks so much for all of your replies! I have spoken to my GP to try and get me referred for a lap asap.

Also going to speak to the consultant to explain my scan properly to me so I have all the facts before pursuing IVF. Will keep you updated!x