Advanced Endo

[Thompson36]

Hi

I’m a 30 years+ endo sufferer. After repeated laps I had a full hysterectomy last Feb due to a groin flair and adenomyosis. I am still having significant groin pain to the pint I could cry. For the last year or so I have been seen by orthopaedic who keep saying nothing is wrong even though I explained my history and queried whether it’s deeper endo of the ligaments. I also suspect I may have thoracic endo due to ongoing right shoulder pain that radiates across my chest wall and around the top ribs. I’ve had a mammogram that was clear and they’ve said it’s definitely not breast related. I have also seen orthopaedic for this who have said there is some wear and tear of the joint but this wouldn’t be causing the pain I’m in. I don’t know which pain is the worse I just feel overwhelmed with it and the impact it’s having on my life. I really thought having the hysterectomy would sort everything out. My question is has anyone had more complicated endo and any recommendations for a good endo surgeon in the midlands. I had my op privately and don’t believe he listened to me when I queried deeper endo, he thought it could be a stuck ovary. The site of the pain has not changed in the last 18 months just got worse where it radiates from the groin left side to underneath around to the buttock. I can’t afford to go back to see him as his prices have shot through the roof and he no longer works in the NHS. I just feel no one is listening to me. The GP’s also haven’t helped and just say I have a chronic pain condition and there’s nothing more they can do. I don’t know where to go from here 😥😥

[Lily1986]

Hello.

I’m so sorry for what you’ve gone and are still going through.

I have stage 4 endo and the last surgery removed left ovary and both tubes.

Only option left is hysterectomy but delaying as long as poss due to colostomy bag risk and further damage to nerves and bladder.

I have had a constant pain in my lower left side / groin area since having left ovary removed. It is there constantly and some days it is a lot more intense than others.

In addition to that I have pain sitting and then back spasms from standing and walking so can only really get relatively comfortable laid down.

My consultant has advised he thinks the left sided pain it is nerve related and caused by the disease and also by surgeries. I’m currently on pregabalin which has helped the pain radiating down my leg but hasn’t done much else so far.

It’s so horrible, was the private consultant a specialist in endometriosis?

I can relate to the difference in how they treat you in you return with pain following surgery either private or nhs. It’s like they are cross and disappointed with you for it not working and write you off.

Meanwhile we are just left to live in ridiculous levels of pain.

Have you been referred to pain management? I’m waiting for an appointment.

Message me anytime you want to chat or vent.

Best wishes to you xxx

[Thompson36 in reply to Lily1986]

I saw the endo consultant privately who did a lap 4 years ago as a NHS case and then when the groin pain started a saw him again at which point he was totally private. Endo centre Birmingham. As he’d discovered adeno the first time round he advised on the total hysterectomy which I was fine with but stressed to him that the pain was definitely coming from the crease of my groin and radiating down around my genitals. When I queried deeper endo he brushed me off. I paid privately as I thought he’s been in before and knows my insides. The pain was back within weeks. I don’t want to go back to him and also can’t afford to as his rates have gone through the roof. The GP has prescribed gabapentin and pregabalin before but I don’t want to be on that type of medication. Also tried the pain management course but didn’t find it particularly helpful. The last two lessons which were probably the most important ones (chemist and psychiatrist) were cancelled due to Corona. It’s eased off a bit this morning but was in agony yesterday. When I lean forward it’s a pulling sensation all the way round to my buttock. I had a constipation flare last week as I’d taken codeine so wonder if that’s triggered it? It’s just so debilitating when it flares. I’m on HRT but wondering whether to drop the dose but then worry about the menopause symptoms which were horrible and as debilitating in a different way. Just going around in circles 😥. Thanks for the talk ❤️

[Gwen172]

Hi, I’m 26yrs post hysterectomy and still have debilating pain. After hysterectomy the pain remained the same. I don’t think the surgeon went looking for endo so that’s why I continue to be in pain. Nobody listened to me. I’ve been all over the place looking for answers. It wasn’t till I found this group I realised the problem was still very much endo. Drs have been rubbish, all they care about is their budgets. Best thing I did was to book private appointment to see bsge specialist and then quoted what I was entitled to my dr. This group educates us on what we are entitled to. The dr could not fob me off this time. Don’t give up. I know it’s draining physically and mentally. X

[Thompson36 in reply to Gwen172]

What did you quote to the GP? I’d be really interested to know as I think mine now have me down as a “problem” patient 😡. I know there are NICE guidelines for endo patients but not sure what else I could present to them xxx

[Gwen172 in reply to Thompson36]

Have a look in the files. I have stage 4 and I think if it’s stage 3 or 4 you are entitled under the NICE guidelines to be seen in bsge centre. I think I must be down as a problem patient too. They seem to think because I had hysterectomy that I would be cured. How ignorant. I’m living proof that it’s not the case. Waiting now for excision. I’m scared but relieved that someone is helping me, it’s such a long, lonely road to take. I struggle in explaining it. My pain is in lower back, radiating down both legs. I’m on pregabalin and no hrt. Been on that too long I think. X

[Simo7]

Hello, I’m so sorry that you’re still suffering. I can’t offer much help but to say that my pain (one of them!) is also in the grease of my groin, I’ve had this one since since I had my utero sacral ligament ablated by a general gynaecologist (who also didn’t read the rules on NO ablation to the utero sacral ligament by a gen’ gynae’) If your pain is in the same place, then maybe ask your BSGE surgeon to look there and also at your rectum. I think deep infiltrating endometriosis on USL also gives lower back pain. Mine was also on my rectum last time so needed shaving.

Also, I’ve suspected endo on the diaphragm too, I think they go hand in hand... I could be wrong, it’s just something that I read.

Don’t give up and Know that you’re not alone. They make most of us feel that we’re problem patients because it’s easier than finding out what the problem really is xx

[Thompson36 in reply to Simo7]

I definitely had utero sacral ligament involvement and my bowel was stuck which he apparently dealt with during the hysterectomy. I did explain that the pain was in the groin crease but he didn’t seem to think it was coming from there even though I queried deeper endo. This was an endo consultant who is supposed to be one of the best in the country 😩. Within weeks it was back only its a lot worse now than what it was 😥

[Simo7]

Did he ablate or excise any endo on the utero sacral ligament? Sounds like you need excision surgery on your utero sacral ligaments...but I’m not a Dr. ...definitely sounds like you need an excision surgeon xx

[Thompson36 in reply to Simo7]

Yes and also unstuck my bowel. My concern then and now is that he wouldn’t get to the spot that’s tethered/causing the pain. It was at the Endo Centre Birmingham and he’s supposed to be one of the best.