Scan showed adenomyosis - also have endo and PCOS - fertility worries

[cakeandclueless]

Hi all,

I am going through testing before starting fertility treatment and at my ultrasound yesterday they found adenomyosis. I have already been diagnosed with PCOS and had a laparoscopy 2 years ago and was diagnosed then with endometriosis (stage 2). Today is day 27 of my cycle and I'm still bleeding, it's just exhausting and getting me down.

I'm on the waiting list for a lap and dye where they are planning excision too for the endo, so I guess I'll know more after that, but it's all running around my head and I'm feeling worried that getting pregnant is going to be difficult, especially as I now know I have an extra condition to potentially stand in the way (and my husband also has low morphology).

If anyone who also has adenomyosis and has been through fertility treatment would be happy to share their experiences, I'd appreciate it

Thanks in advance x

[BooWho]

Happy to share but no happy ending, I’m sorry.

Stage four endo and adeno. Did IVF rounds got good egg numbers but none made it to day five embryos. Think my eggs had been effected by the conditions and possibly my age (was 36 at the time).

However there is another thread on here with the same topic and some women have been successful. Hope you are too.

[cakeandclueless in reply to BooWho]

Thank you for taking the time to reply and I’m sorry to hear about your experiences. I’ll have a look for the other thread, thanks for the heads up

[AllthatGlitters]

I have adenomyosis and told at the time which was 5 years ago if I wanted children I should try now as the longer I leave it the harder it will be. I don’t have a success story, it wasn’t meant to be for me. Also have endometriosis. I know what you mean about the bleeding, I bled for over a year without a break. It’s exhausting. On decepeptyl injections and still bleed. Good luck for the future, sure there will be some positive stories on here 💗

[cakeandclueless in reply to AllthatGlitters]

I had been told the same with the PCOS and endo about trying sooner but we’re a year in and so far my periods have been all over the place. I’m trying but finding it hard to be hopeful all the time. Sorry to hear how difficult it’s been for you - I can’t imagine bleeding for a year, that must be so tiring. I’ve bled for two months before but not that long. I think the bleeding makes it hard not to think about what’s causing it as well as being really draining. It’s a constant reminder! Anyway thanks for replying, it helps to hear from other people who get it

[Jess1981]

I don't have adenomyosis or PCOS but I do have endometriosis. It took me 6 years nearly of trying for a baby with my hubby and 3 abnormalities in my period both unexplained until my endometriosis was finally diagnosed in June 2017. I had my first pregnancy with my hubby( have a grown up son from a previous relationship) afterwards but it was a chemical pregnancy. After my 3rd endometriosis surgery ( but with an endo specialist) I fell pregnant with my now 2 year old daughter 2 months after that surgery! Crazily I decided to try again! I was not expecting to fall and thought my endo was back- I conceived but lost my second daughter Amelia at 20 weeks pregnant last November ( no cause of death was established) heartbroken we tried again - January we had another chemical pregnancy, followed by another loss in March at 8 weeks. We were then referred to miscarriage specialist no cause was found of the losses. I'm now 5 weeks 4 days and hoping this is my rainbow baby. Once my endo was treated we were able to fall pregnant naturally, which before the diagnosis and treatment was impossible. I hope that offers some hope. I also add I'm not young I'll be 40 in November! Good luck I hope the treatment helps you to conceive. Xx

[cakeandclueless in reply to Jess1981]

Thank you so much for sharing and congratulations on your little girl - I'm hoping surgery might help me too. I'm sorry to hear about your losses, it sounds like you've been through so much. It does help to hear that there's hope - wishing you the very best for your pregnancy xx

[Lily2491]

Hi. I'm 20 and I have PCOS. I think I might also have endometriosis like you. How did you distinguish the symptoms and then talk to a doctor about it? It took me going to a doctor since I was around 13 and didn't get diagnosed until 5 years later. I wish you the best x

[cakeandclueless in reply to Lily2491]

Hi there, I’m sorry to hear you’re going through this. I had heavy, painful and irregular periods from age 11 and like you diagnosis with PCOS took many years. I was diagnosed aged 24 following a scan that also showed a cyst. Two years later the cyst had grown and caused pain and the endometriosis was actually spotted on an MRI looking at that cyst and confirmed when I had the cyst removed with a laparoscopy. The symptoms for me overlapped so much that when they told me it was PCOS I didn’t question it, even though that didn’t explain the pain, just the irregularity. I wish I had pushed for more investigation at your age. It was only by fluke that my endo was diagnosed. I’d recommend making notes on your symptoms and when they happen throughout your cycle (if you have one) ready to show a doctor. It can be really difficult but it’s your body so if you want a referral for further investigation ask for it. I also saw several GPs before one took me seriously so if the first one doesn’t help, see someone different if you can.

I hope that is of some help. Wishing you the best x

[Lily2491]

Thank you so much for replying. What you've said is very helpful! Not many people understand what its like going to the doctors and not even understanding yourself what is going on in your body. I wish you the very best in the future! x