I had excision surgery 2yrs ago back when I was 21 but still get really severe pain when menstruating – am absolutely heart broken that this is still happening & I am trying to find an explanation.
Each specialist I see says something different. Adeno has been mentioned (although I don’t have any symptoms beyond painful periods) & have ovarian cysts which could indicate PCOS (as well as some other symptoms that could be connected), & a tvscan showed a lesion of endo on the bowel that was missed during surgery... but my current specialist thinks that it’s too small to cause all the pain. He’s said I can have it removed but there is no guarantee that it will make a difference to my symptoms/pain levels, plus there are all the risks of bowel surgery to consider.
He also said I should go to a specialist pain clinic run by someone & have something called an MRN? This is to see if it could be connected to my nerves, even though I don’t think I have any nerve stuff going on because I’m not in pain all the time, just when I menstruate. (I don’t know much about this so I could be wrong) Has anyone done this? How did it go?
I really don’t know how to move forward from here. The symptoms are so severe that they’ve basically ruined my life for the past 5+ years. I’m so tired out and I just want some relief. I don’t know what to do. If anyone has any advice I would really appreciate it. I am unsure if i should go through with the surgery or not.
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hannah11
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Firstly, are you being treated at a BSGE endo specialist centre? If not get a transfer due to the bowel involvement.
I have deep endo. It's a nodule between my bowel and cervix/ vagina. Like you I don't get permanent pain but suffer permanent fatigue, and dyspareunia. I do get menstrual pain. I get diahrroea on day 1 of period and faint occasionally during bowel movements. Apparently adhesions from the endo have distorted my bowel out of shape.
A general gynae first diagnosed me probably wrongly with adeno. Severe bloating and extreme periods are typical, it can usually only definitively be diagnosed via biopsy post hysterectomy it's near impossible to see on a scan.
I don't know much about pcos but hear it is v painful. Deep endo is howevrr often found with ovary cysts though, so that is not unusual for this endo type one cyst may not be pcos. I had a small one removed during my diagnostic lap. My menstrual pain improved significantly even though the cyst was tiny.
Regarding surgery it depends what you have already tried and the health risks posed due to the placement of the endo.
Like you I found it a dilemma I have been resisting further surgery as I struggled after my lap , read of difficult cases here which scare me and symptom wise have little pain ( at least consciously) though the fatigue is devastating.
In the six months since my December lap I tried the coil which stopped periods altogether and the associated menstrual pain but sadly was physically so uncomfortable I took it out. I tried zoladex and had a severe reaction to it and had to stop after 2 months. That ruled out an oopherectomy which I was uncomfortable with.
I went back to the consultant last week and he basically told me my endo was still active so the odds were that mine would continue to grow and the risk to bowel meant an op now was advisable as it can be progesterone resistant. Also I reached the point where limping on is a pretty rubbish option too and there are few options left. I have read some indications it can help the fatigue not just pain. I hope that is right.
Can i ask, was your lap in december treatment? I have a very similar story to yours. Surgery in december! Within a month my endo was back active. Im progesterone resistant. I tried combine and that couldnt stop the bleeding, now on my second course of zoladex in a year. First one failed so not holding my breathe. First time i didnt have HRT and omw, i dont want no hysterectomy. This time with HRT and bleeding still! But unlike you my Drs are reluctant to operate again. I had bowel involvement last time. Ive had 2 laps. 1 diagnostic and 1 treatment. Not sure what else to try as everything so far has failed!
My lap in December was combined diagnostic plus treatment removal of one small ovary cyst which was the probable cause of my intensified period pain.
Heloo85 , Well done for sticking out the zoladex I lost the ability to function cognitively on it, still have memory loss from that period and will never touch it again. No way will I have ovaries out!
My gynae surgeon has been bsge endo specialist from the start which perhaps helped. I guess every case of deep endo is different. But if you were treated in general gynae then get a second opinion with a bsge expert. In my case he seems very concerned at the risk of not doing anything and it developing into bowel penetrating or blockage not sure why perhaps position / direction of my nodule or the extent of the adhesions looo causing significant distortion. He also seems to think position is operable. He does two bad cases a month he says so just hope his surgical skills are as good as he says.
I actually didnt last very long on my first zoladex and concerningly am suffering terribly cognitively. My memory is shocking atm! In fact just booked an appointment with Dr for second time. I was borderline on recall test in january. Im worse now! Ive had no choice. Im under a BSGE surgeon and had the whole shebang done. I too have DIE. In fact not one deposit was superficial. I had bowel involvement. Im sure i have bowel involvement again now seeing as im terribly constipated and i cannot move my bowels. But no idea. My specialist said hes sure my endo is still active but wont rush an ultrasound through, although he will send me for one, but hes not rushing me back into theatre because surgery was difficult last time? I dont know. Im definitely concerned about the cognitive thing. I wasnt sure if it was from chronic pain, fatigue, so endo related, or treatment. GP thought depression although hasnt treat me for depression? Hmm....... scared!
Hugs I didn't mean to scare you. I thought it was just me. It's not mentioned in the pil so I may send a yellow card in to report it.
I took the standard tibilene hrt dose but still couldn't think straight enough to construct a sentence and finish it. It was mortifying. Even my surgeon witnessed it in my check up. And I still have memory gaps. It improved after doubling the tibilene enough to sort of function but I refused a third cycle of it. Apparently dementia is a long term risk of oopherectomy induced menopause and my dad has it so I was scared to continue and I had a whole host of other vile effects worse than the endo symptoms any way like the joint pain dizziness sweats sleep issues nausea etc
But for other people it works like a dream apparently. Bizarre.
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