Endo and Adenomyosis

[Scoutybob]

Hi all -

I'm just wondering if anyone can advise further on what the likely next steps and/or treatments may be in my situation?

I've had a private scan which has said: likely adenomyosis (focal and diffuse), bilaterial endometriomas - 4x5cm endometrioma on right side and smaller one on left side, ovaries kissing, involvement of fallopian tubes giving the appearance of a tubo-ovarian complex (1 with hydrosalpinx and other with possible haemotosalpinx) and ovary adherent to the uterosacral ligaments and posterior uterine serosa.

I have gone gluten-free to try and manage symptoms and researching now anything that could help.

I'm currently waiting for my NHS appointment in a month but it's just with a general gynae and not a BGSE so I'm thinking of asking for a referral there?

Will they be inclined to look at more invasive surgery? I'm just trying to get my head around possible options.

Edited to add - I’m 40 and have two teenagers so I’m not looking to maintain or improve fertility.

Thanks so much.

[Laura210388]

Hi sorry to ask but what scan did you have and can you recommend anywhere? I am thinking of going for a private scan but my consultant told me if I have a private scan this knocks me off the nhs waiting list, does this sound right? Thanks

[Scoutybob in reply to Laura210388]

Hi Laura - I’m not sure if I’m allowed to recommend the centre I went to? However on googling there are quite a few. I was told the same thing as you regarding nhs and private.

However my initial hospital scan was querying either a tubo ovarian abscess or saying it was a large complex mass with vascularity so I was concerned regarding the urgency to wait for an nhs appointment. In the end I booked the nhs app for the first date possible which was still a six week wait and in the meantime booked a private clinic for the scan away from the hospital whilst maintaining the nhs appointment.

The private scan has reassured me that it’s a condition that’s been there a long time so the nhs wait was ok and nothing really immediate if that makes sense.

How close are you to your initial appointment? Because I did this straight away I thought even if I get knocked back a couple of weeks, it would be worth it for clarity as I’d not been waiting months before deciding to try a private consultation.

Private was genuinely amazing. I was so confused up until then and had not seen anyone to fully discuss and been told different things. With private she spent a whole hour with me, showed my the scan on the wall and talked me through it and her findings as she went and what was happening so it was clear as mud.

[Laura210388 in reply to Scoutybob]

Thanks so much I really appreciate your help

[Sez73]

With what your scan shows I’d prefer to see a BSGE surgeon and not a general gynae, I’ve always referred myself direct to private surgeons after being seriously failed by the NHS for 10yrs plus so am prob not the best advocate for general NHS gynaes! I did have bowel involvement with severe stage IV endo, adeno & ureter involvement which necessitated a BSGE surgeon due to complexity tho. Treatment options will differ dependent upon where you are in life with things, age/if you’re wanting a family etc. If improving conception chances is your priority, then that may follow a different agenda to someone who is maybe merely needing pain relief but already has a family. I went straight into v aggressive surgery prior to IVF to try and improve chances, had fertility not been an issue I may have just been put on eg Prostap injections to induce a ‘fake’ menopause to shut off ovaries and see if that calm led things down, or some people may try Mirena. Everyone is different and a decision will be made on your scan results and also from what feedback you give as to what you’re needing. While following a gluten free diet is great, it won’t sadly be some magic cure. I’ve done dairy free too and while it dies aid slightly in lessening inflammation it doesn’t fix things. Your scan shows a lot and treatment should be tailored to you. Endometriomas at 5cm they’d maybe look at removing. It’s a minefield. I’ve seen NHS, private surgeons who also crossover to NHS and purely private and sadly however much I’ve thrown at this nothing has made me better. Treatments for some will just buy time, while for others will help enormously. It’s a multi faceted condition which can affect in so many ways that unfortunately it’s not a one size fits all in terms of treatment and success.

I wish you all the best and hope you come away from your appt with some good options to try x

[Scoutybob in reply to Sez73]

Really helpful, thanks.

I should have said - I’m 40 and already have two teenagers so our family is complete luckily. I’m aware that diet won’t solve things, just looking to try and improve where I can with diet and exercise as I know it will be a long haul x

[Sez73]

that’s great that you already have family as still wanting children always massively limited my treatments options. Sorry didn’t mean to patronise saying diet won’t cure, you’ll know that already, it certainly helps a bit on the inflammatory side as does dairy free but sadly not enough! The fact that you have family will certainly give any consultant a lot more scope with treatment options so all the very best of luck with getting something which helps you. I had 5 surgeries, some 9hrs long, 9 rounds of ivf and tried every treatment going but nearly 50 now and still big problems, body exhausted from it all so having a break from everything as I think sometimes too much surgery can also cause issues with extra scarring/nerve entrapment/things sticking again.

Just wish I knew what I knew now in my 20’s and would have tried to have kids then.

Good luck with everything, I hope you get some respite from it all x

[Scoutybob]

Really feel for you. It has been our big blessing with the children and it was just luck. I fell pregnant accidentally with my first at 22 and then we planned the second 2 years later as we were in it by then! It’s been a struggle having them so young but grateful that it happened now. I had a miscarriage around 2018 and now wondering if that was due to this x

[Sez73]

I get v down as I’m with my partner I met at uni at 19 but we split up at 23, got back together at 37, by which time endo had ravaged my system yet still remained undiagnosed amazingly and couldn’t have kids. Doctors used to tell me I was just sat too long on a chair at work and that’s why I had bad back pain. Only when I moved to Sydney was I diagnosed and was close to losing a kidney. I had 2 miscarriages and definitely blame the endo and adenomyosis for sure. Sorry to hear u went thru that too, just horrible. I’m glad u were able to have a family and I’m sure your kids will love having a young mum, especially when they’re older. I’m 50 and my mum is only 75 and it’s great. I’m just gutted I didn’t have an accident at uni esp when I’m now engaged to my boyfriend from uni! All the best with everything.

[SarahK73]

I had both and needed bowel surgery and a hysterectomy so good luck.

My bowel surgery was the worst and very painful as I got an infection post surgery but was able to avoid a bag.

Since I have been ok just a nobly bloat and nose bleed!

Sarah

[SarahK73 in reply to SarahK73]

I’m 50 now all my surgery was at the ag of 35! I was unable to have children.