Confirmed endometrioma on right ovary, but no endo diagnosis?

[Toz88]

TW: miscarriage

Hi everyone, I was hoping someone in this community might be able to help shed some light? I'm 34, have experienced very extreme period pain (to the point of vomiting) my whole life but drs have always dismissed it. This year I have had two miscarriages (one at 9 weeks, one at 6) so I did a private scan to check things out. They diagnosed a 'probable' endometrioma on my right ovary. I've just been for my follow up scan on the NHS 3 months later, and they've told me it is a definite endometrioma, 3cm so not huge.

I asked the Dr is this meant I definitely had endo and he wouldn't give me a straight answer. Everything I'm finding on the internet suggests you can't have one without the other so I must have it, I wondered if anyone here could shed some light?

I am panicking because I'm desperate to have children and time's ticking on. The Dr suggested I look into private treatment because the wait times on the NHS are so long. I absolutely can't afford it but am lucky enough to be able to borrow from my partners fam. I'm London based, would also really appreciate recommendations if anyone has any??

Thank you so much <3 xxx

[Lindle]

Yes an endometrioma is a confirmed endo diagnosis. This is ovarian endo and is very often associated with rectovaginal endo (between the back of the uterus and rectum). This does show on scans also but needs an advanced sonographer with appropriate training so yours was probably not trained to look for it.

Given the delays on the NHS it is a good idea to try and get it confirmed if you do have deep endo elsewhere and there is a world renowned ultrasound centre in London who are trained to diagnose deep endo by ultrasound. If you do have rectovaginal endo you would then need referring to a specialist endo centre. The waiting lists are very long but at least this would get you on the right waiting list from the start rather than waiting months on a general list in gynaecology for a diagnostic lap to then find they can't treat you if you do have deep endo. The cost of a scan is £290 or £390 with a combined consultation if your family could do this for you.

I'll pm you the link.

[Toz88 in reply to Lindle]

Omg Lindle thank you thank you!! This is very helpful <3 I have gut problems so I bet it is in that area, thank you so much for replying quickly. I new it meant a confirmed diagnosis, frustrating they couldn't just say it....

[Lindle in reply to Toz88]

I have just seen the fees have gone up to £330 and £450 respectively but in all fairness the previous ones had been in place quite a while.

[Toz88 in reply to Lindle]

Thanks so much. I've spoken to them on the phone and am a bit confused about what they are offering. I can get the scan to confirm my diagnosis with them, but they said they can't perform the surgery or do an NHS referral, so given that I effectively already have my diagnosis I'm confused about whether or not this is worth spending money on?? My understanding is that my next step via the NHS would be a gynecological laparoscopy, but I might be wrong and there's another stage before that? I just don't want to pay for a scan which would still put me on the same waiting list I'm about to go on anyway.

Sorry you probably don't have all the magic answers haha, this is all so new and confusing so just trying my luck in case you can offer any advice <3 Thanks so much xxxx

[Lindle in reply to Toz88]

No they don't do surgery or referrals as they are just a diagnostic centre. But if a scan did show deep endo you would get the report and your GP would then use it for a referral.

Your next step on the NHS would be a lap but if they were to find deep endo they wouldn't be able to operate as this can't be done in normal gynaecology. It requires the expertise of advanced surgeons in tertiary endo centres. So it is a different list that you would go on if you needed referring to a centre and the wait for another more complex surgery would start again.

You might not have deep endo but as said it often accompanies endometriomas and you have been suffering a long time. Symptoms can sometimes be an indicator of rectovaginal endo so do you have any lower back/leg pain, pain with sex, bowel problems, shooting pains up the vagina/bottom for example?

[Toz88 in reply to Lindle]

Hey Lindle , sorry for the slow reply but I just wanted to say thank you so so much for the recommendation and for this explanation. It's been such a wobbly week trying to digest this all and what it could mean for my fertility, but I've booked myself in with them for next tuesday for a diagnostic scan and I'm really grateful to a have a way of getting answers quickly and without surgery as well, so just wanted to check in and say I really appreciated your quick and thorough responses. It's meant a lot to me in a difficult time, and I wouldn't have known where to turn without this advice!xx

[Lindle in reply to Toz88]

I'm so pleased to have helped you feel better x

[Salamander88]

I think Lindle may be right about it orienting saving you time in terms of getting onto the specialist endo waiting list to start with, not the general gynae one, if there is deep endo there - you may need to check which gynae team you have been referred to. My own experience at UCLH has been super slow because the initial process with general gynae took *so* long before I got my ultrasound scan which finally showed up the deep endo lesions, and then the second round of waiting once I was referred onwards to the specialist endo team, who can do the excision surgery (to try and take the deep lesions out and treat the symptoms) not just the general laparoscopy for the purpose of getting a diagnosis. Hope that makes some sense?Best of luck!

[Toz88 in reply to Salamander88]

That makes total sense thank you - I am booked in for the diagnostic scan on Tuesday. I've called my drs twice and they said they haven't even received the info from the hospital yet to do the onward referral, so feeling incredibly grateful to this forum and the fact that I can afford the £450 scan 🙏 As I'm in full blown panic mode and at least this way I can get some more info and work out what I'm dealing with xxx

[Laraele]

Hi Toz88, I'm so sorry to hear about your previous misscrriages and dismissal by Drs. The path to effective treatment is not a clear one. Advanced scans when performed by professionals (not any NHS scan) can help surgeons prepare for surgery, when they know what to expect that can put the correct team in place e.g urologist, gastro surgeon. If you chose the surgery route, please note that not all surgery is equal, wide excision as apose to ablation only gives better long term results. This will take some research to find specialist centres (not all private clinics are performing the most advanced surgery). Sometimes if you have a private consultation you can be transferred to that surgeons NHS waiting list. The key is to educate yourself on proper endometriosis treatment and find a specialist, most gynaecologists are barely taught about it. Dietary and lifestyle changes are paramount even if surgery if your preferred treatment, but focus on one thing at a time

[Toz88 in reply to Laraele]

Thank you so much <3 This is really helpful, really really appreciate your reply xxxx