I had the news I don't have endo which is what was expected.
I'm rather upset as I was hoping to get a diagnosis of something! I just really want answers.
I was booked in under a cancellation and from a Google I don't think the lead surgeon specialised in endometriosis but the hosptial is recognised as endometriosis specialists.
*Bit of background- I'm 26 and been pretty much signed off since February. The pains have been bad since last summer but have been present for several years. I'm now at a point where I can't walk properly, I can manage 10 minutes and then I'm in pain for the rest of the day. I have pain during sex (we try occasionally but it happens 90% of the time), it aches and stabs particularly the week leading up to my period and the week of. But I still have pains the other 2 weeks. I'm on contraception and have been since 17, during my teen years I had heavy periods but contraception has made this not an issue.*
I've been told my pelvic region is clean and I'm being referred to the pain management centre. Does anyone have any experiences of this? I'm already on: paracetamol, naproxen, high dosage of gabapentin, oramorph and morphine tablets...but still can't function as a human being.
Also any suggestions of other conditions that meet these sort of symptoms- I don't want to self diagnose just interested in people's experiences. I've heard about pelvic congestion syndrome but then read that can be diagnosed in a laproscopy ?!
Thank you 💞
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Bluehusky96
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Sorry to hear you didn't get to find out the cause of your pain/symptoms. I can't really offer you any advise but I'm sure someone on here will be able to suggest something. Just wanted to wish you well and hope you're not feeling too rough after your lap.
We're sorry to hear you didn't get a diagnosis of endometriosis following surgery - it's so upsetting and frustrating not knowing what's causing the pain. Did the surgeon ever discuss the possibility of Adenomyosis with you? It has many of the same symptoms as endometriosis, but is very difficult to diagnose during a laparoscopy as it is buried deep in the muscle. MRI can often be the best tool for diagnosing Adenomyosis.
I’ve not managed to have any surgery yet to see what’s actually going on with my body, however I paid for an internal ultrasound which detected adenomyosis. I hadn’t even heard of it and there isn’t even information on the NHs website about it other than the fact it’s a reason to have a hysterectomy.. It causes me horrendous pains especially with my bladder and urination and also plays havoc with my bowels. But it really does limit my life at times, could be worth investigating to see if this could be the reason? Im sure the only ‘gold standard’ diagnosis is when they send the uterus away after a hysterectomy.
Thank you, sorry to hear of the pain it causes you, and it does seem to match the symptoms!Is there a specific surgery waiting list you are on for that ?
When your doctor gave you the diagnosis, what sorts of questions did you ask them? My gynae suspected I had adenomyosis after an MRI scan and confirmed it after a laparoscopy (no endo found). I have my followup appointment on Wednesday but I'm not sure what kinds of questions to ask. The ones that come to my mind are:
- is it severe?
- will it affect my fertility and if so, in what way?
- is the pain likely to get worse?
- what treatments can you offer me other than pain management? (I'd like a hysterectomy but I suspect my gynae won't support me in this because I'm young)
If you have any other questions I might be able to ask that'd be fab!
I’m older than you and carrying children/ fertility wasn’t on my radar but, as it is a big procedure, make sure you are sure you want a hysterectomy.
If so, ask about the extent of the disease-whether or not one/ both your ovaries/cervix will need to be removed or just the uterus. Also, ask about HRT etc.?
They may offer you a fake menopause using Zoladex to see if that helps with pain. From my own experience(and articles posted on this site) it really does nothing for adenomyosis. Just when you though endo was bad enough!
Hi there! I'm 24 and became unwell very quickly last year with similar symptoms, progressed to the point I had to stop work and be home all day. I got nowhere with my GP and was lucky enough to see a private gynaecologist who immediately found adenomyosis on an ultrasound. Its not always that easy to find, but in our age group can be very quick to progress and become very severe. Best advice is to push as hard as possible for scans and treatment. I was ignored and am now 10 days post op from total hysterectomy because of adeno and endometriosis. Best of luck to you and if I can be of any more help let me know!!
Yes I am in North London, I originally saw a doctor called Mr Athanasias at the Medical Chambers Kensington. He diagnosed me but couldn't get approval to do the surgery so I was then referred to Mr Padwick at Spire Bushey Hospital which is near Watford. I would advise that if you can, do some research into some female gynaes though, I found a lady who works in this area i just can't remember her name but even amongst gynaecologists I've encountered some issues with only dealing with male doctors
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