Severe left pain/adhesions/adhesiolysis rant. Tired and confused.

[TallulaShark]

Recap: Laparoscopy and TV Ultrasound both "clear" for endo, but severe/deep/widespread adhesions. Also "clinically insignificant" cysts and fibroids. Awaiting another TV scan, hysteroscopy, and adhesiolysis.

I came on my period Friday morning, cycle day 25, and the pain last night kept me awake until 3am. Never experienced anything like it. My periods are so unpredictable nowadays, sometimes so heavy it's like I'm hemorrhaging but less painful. Sometimes less heavy but so painful it's like someone is tearing a knife through my uterus. Sometimes both. Occasionally I'm taken by surprise by a relatively "chill" period, at least by comparison. But every time I think I've experienced the worst of it, I'm proven wrong.

The pain last night was deep inside my left groin, like a relentless gnawing right between the front of my thigh and pubic bone, and radiating all the way around my left hip.

This is where I experience the most of my severe period pain, and it's this side that I have the cysts on my ovary and my ovary is also fused to my abdominal wall. It's this side that I have experienced sharp pain or a "snapping" sensation if I strain suddenly, for example if I sneeze when standing. It's this side that I experienced such a severe "snap" in my groin when flexing my hip three years ago that I had to go to A&E because my entire leg and pubic area went numb with pins and needles and then caused so much pain in my hip that I could barely walk for weeks and had to go for xrays, and have had constant hip pain since.

I'm just so tired of not knowing what's going on. I fully accept that my periods may have become so unpredictable because of my age, 38. I fully accept that the doctors haven't found endo. However I don't accept the suggestion that my adhesions (so severe that the surgeon performing my lap just took a look and went "nope!" as she'd not seen anything like it, closed me up and referred me to a specialist surgeon for adhesiolysis) have been caused by just my c-section, or PID which I'm as certain as I can he that I've never had.

The risk of adhesiolysis causing more adhesions, and the risk of bladder/bowel perforation has me worried whether to go ahead. But the possibility of reducing my pain and the possibility of finding something that may have been missed beneath the density of adhesions makes me really want to go ahead.

Still tempted to pay for a private MRI seeing as I keep being refused one.

Any experiences similar to my pain, or of adhesiolysis etc would be very welcome!

[Tangoandmax]

So sorry you’re going through it! Just wanted to pop on a little of what I know re. PID.

My mum ended up with frozen pelvis due to widespread adhesions caused by PID. She never had a STI which is the most common cause. They said that sometimes your own bacteria can travel and cause issues, and if not caught (because you probably wouldn’t know this was the case) PID can cause extensive adhesions.

At the age of 40, she had a very long/complicated surgery to unstick her organs and had a hysterectomy whilst there due to the damage/state it was in. They said it was a miracle she hadn’t got sepsis. Since recovering from the surgery she has had no problems at all.

I would have thought that if it was PID, there would be signs of an active infection rather than just adhesions. Have you got any photographs of what was found? Perhaps a second opinion would be best, with a specialist who can review images and give their advice. Fairly certain from others posts that they do take them so you could arrange a subject access request for them.

Have they never offered an MRI? My hospital have given me one before putting me on a waiting list for the lap, they were worried my case would be too complicated for their surgery team, which seems a logical step. It is most definitely worth paying for a private one/consult with a specialist who actually knows what’s what. Just find a highly recommended one in your area, I recently paid for one who was clearly just in it for the money. It’s like finding a needle in a haystack a consultant that understands/listens.

Good luck x

[TallulaShark in reply to Tangoandmax]

Hi, thank you for the info! I have asked for an MRI three times since my lap in March, to three different gynaecologists at my hospital. All of them refused. It's mind boggling. I probably should have mentioned that in my post. It's hard keeping track and I was so tired from lack of sleep when I wrote the post this morning! 😅

[Tangoandmax in reply to TallulaShark]

I don’t understand why they’re refusing, especially if you’re having a TV scan. A lot use MRI now to plan for surgery, it may or may not show endo but can give them an idea of what’s they might find when they go in to at least make sure the right people are operating.

It could absolutely be worth making a complaint about your op. You’ve been put to sleep without that check being carried out; which means there has been no benefit to the risk of surgery at all. They’ve gone in, come out and left you as is, despite how long you’ve waited for surgery etc. if I’ve learned anything from the shit show I’ve been through it’s that making complaints is the only way to get anywhere.

[TallulaShark in reply to Tangoandmax]

It is mind boggling and frustrating! Who would you suggest complaint to? Thank you again!

[Tangoandmax in reply to TallulaShark]

Absolutely PALS. My complaint was passed to the Director of Gynaecology and he dealt with it really well. I’d been passed from locum to locum after waiting years for my appointment amongst other things. I hear lots of varying outcomes of PALS complaints but all of mine have resulted in progress (which wouldn’t have happened without) even if the it doesn’t result in an MRI, you’ve every right to share your disappointment with the treatment and have it down in writing. X