Hi, I'm going to apologise in advance for the long one, but I guess I want to vent and see if anybody has experienced the same symptoms but had different treatment offered, or even a diagnosis? I half wonder if it's adenomyosis but until now just think it's "one of those things". What are my rights as a patient, in terms of...can or should I ask for an MRI to check for adenomyosis, and should or can I ask for someone skilled in identifying US or MRI scans for adenomyosis? I don't necessarily think it is adenomyosis, it it's just the nearest I've come to reading that might fit. The other half of me just thinks I no longer care what it is because it's clear gynaes don't, so I should just go for the hysterectomy option. I'm a bit overwhelmed, confused and lost!
I'm 45, never had children but suffered with what I guess must be dysmenorrhea since I started my periods over 30 years ago. I have dealt with this by being on various forms of the pill on and off over the years but stopped taking it about 5 or 6 years because of various side effects from them; I tried the Mirena coil after this but suffered severe rash and itching so had it removed.
Since then, I have been trying to manage my monthly pain using prescription medication, which has been Tranxemic acid, Mefanemic acid, Naproxen, soluble 30/500 Co-codamol and, since my last period, Cyclizine as an antiemetic, as my D&V usually brings up what I've taken. Nothing seems to be touching the pain, now, even a cocktail of the above. I try to take Naproxen for a few days before so it builds up in my system, but I have a salicylate intolerance, so my hands, face, throat, tongue all swell up and I get a very tight chest. So it's all a bit of Sod's Law.
My experience with gynaecologists so far has been pretty underwhelming. I had a D&C a few years ago after a hysteroscopy to investigate inter-menstrual bleeding and a localised thickening of the endometrium. I never found out what it was, only that it wasn't anything sinister. I awoke in a bed with no staff, and the surgeon and operating staff had all go e home. My mum had had a hormone-sensitive cancer of the endometrium when she was 52, and both she and my maternal grandmother suffered with the same monthly pains, but they disappeared when they both had children. All of us have/had a tilted uterus.
I have got to the point where I don't care what the reason is any more; I simply want a hysterectomy to get rid of the cause. What used to be 2 hours of intense pain/D&V/fainting when I was younger has now evolved into up to 6-7 hours of the same, often repeated on the following night. I am missing at least one day of work a month, sometimes two.
This morning, after a traumatic (and I don't use the word lightly) 6 hours of this monthly hoo-ha I just broke down and sobbed my heart out because I do, quite literally, feel traumatised.
My last gynae appt last year was a flop: she dismissed inter-cycle pains & vomiting that can be brought on by exercise, and which mirror my dysmenorrhea, as unrelated to my uterus. She said they would be bowel related only. She shut me down when I tried to say the symptoms were exactly like my monthly pains and it was clear she didn't want to listen to me as the patient. She said she wasn't able to access previous scan, D&C, biopsy results because they were done under a neighbouring health authority. She therefore said she would send me for a scan (yet another) and dismissed me with a prescription for the pill in the meantime, which I didn't want. She said she would contact me for a follow-up appt when my scan results were available. However, what actually happened was, I had a short letter to say 'nothing obvious' was wrong, and I was not invited for a follow-up appt. I waited a few months, patiently thinking the invitation would arrive, bit it didn't. So I retrospectively realised that the gynaecologist had not intended to invite me back. I had waited years for this appt, and I was shocked when I realised I had been dropped off the list. The treatment was abysmal.
So now, I have asked for a re-referral from my GP and am going to push for a hysterectomy.
Why won't doctors take this seriously? It feels no one listens, or they makes assumptions to fit what they think is happening or needed, rather than efforts to listen to my symptoms and history and want to help me.
Pelvic and abdominal pain for 6 years unexplained.
Pain clinic
urethra pain
Still no answers two years on
