Anyone had a surgeon who operates on a 'Frozen Pelvis' for a second time?

[Barnyowl]

Hi everyone,

It's a long story, but does anyone have experience of surgery on a Frozen Pelvis for a second time?

I had stage 4 endometriosis with severe bowel adhesions 13 years ago (age 36). I had full hysterectomy and both ovaries removed. My bowel had to be dissected due to the adhesions and I was left with a stricture in the sigmoid colon. It took a while to get over. Couldn't take HRT as the hormones caused the pain to come back, and also due to blood pressure issues.

I had 10 years pain free, but the pain came back with a vengeance 3 years ago.

I've been recently diagnosed again with a frozen pelvis, stage 4 endometriosis, obstructive pathology in the sigmoid and diverticulitis. They also acknowledge the 3-4 days per week of diarrhoea/bleeding, but none of them want to suggest any treatment.

They can't do a colonoscopy and the sigmoidoscopy was incomplete because the 'obstructive pathology' meant the instrument could not get past the rectum.

According to the medics, none of the above causes pain??????

I need to get a second opinion because I know my pain threshold is very high, and the last two times the medics dismissed me, both surgeons came to me after surgery and asked "How the hell could you walk around like that?"

I still want to hold on to my job, but I'm in too much pain and completely exhausted through lack of sleep. Amitriptyline helps me to get to sleep, but the ripping pain wakes me up in the middle of the night. On the diarrhoea days, then I have no chance of any sleep.

I'm at my wits end, so any advice would be highly appreciated xx

[Jenova]

Oh...I am very sorry that it happens to you, it is really a pity... The damage to my sigmoid intestine is not so severe as you, but I have two vast foci. (I learned about this a few weeks ago) I had 2 operations over the past two years, surgeons managed to preserve the ovaries, but I lost the fallopian tube and ligaments. I'm waiting for a concilium at the end of March until I know what they're gonna do to me... I'm not a doctor, but I think you need surgery because the quality of your life due to illness is very poor. Maybe you should try magnetic tomography (MRI) of the abdomen and pelvis. And you should look for a good surgeon to consult. Take care of yourself

[Barnyowl in reply to Jenova]

Dear Jenova,

Many for your reply.

I am so sorry to hear that you are suffering similar problems to me and I hope you get some positive results from your consultation.

I keep fighting this terrible disease. I thought having a complete hysterectomy, ovaries removed and dissection of my bowel would rid me of endometriosis. Sadly not.

Take care and I hope you have a positive outcome xx

[Dee_EndoUK Moderator Endometriosis UK]

Hi Barnyowl

Sorry to hear you're really suffering with your endometriosis at the moment. I've just taken a look at the information we have on our website and it seems that if you decide to request a second opinion, a heathcare professional will rarely refuse your request. You should ask to be referred to an endometriosis specialist. A useful tool for finding a specialist in your area is by looking on the British Society for Gynaecological Endoscopy website. Take a look at bsge.org.uk and go to the 'Endometriosis Treatment Centres' link. Once you have found a person who has an interest in endometriosis, you can ask to be referred to them. It doesn't matter if they are not at the hospital where you are currently treated - with patient choice you can be referred out of area.

Wishing you all the best x

[Barnyowl in reply to Dee_EndoUK]

Dear Dee_EndoUK

Many thanks for your kind comments. My concern is that I had a hysterectomy and ovaries removed and massive adhesiolysis (Bowel) as part of the procedure 13 years ago. The surgeon was superb and gave me my life back for 10 years. The last 3 years have been getting progressively worse to the point I was before my hysterectomy. Given I've got bleeding from my back passage, ongoing diarrhoea (3-4 days per week) and 'obstructive pathology' in my sigmoid, would a Gynae still be the best port of call?

Many thanks xx

[Avourneen]

I'm so sorry barnyowl. I have a similar situuation and I know how terrible it feels. I think you need to try a really really expert doctor for a second opinion. Some of the best endo doctors are based in the US and they sometimes give a consultation for free. Dr Seckin has a special patented technique for dealing with bowel endo that noone else uses which is meant to be really effective. I don't know if it actually works or not maybe some ladies on here might have had treatment with him and he does ops on frozen pelvis. He doesn't do free consultations though.

Message me and I'll tell you a couple of people who do. I'm assuming you've already had MRI etc and thats how they can see what is wrong. Could you ask for a pill colonoscopy or a barium enema on the bowel? That might show more ? I just take laxatives every day but if you have diarreah you don't want that.

It seems pretty ridiculuous that the doctors are saying these kind of really severe bowel problems don't cause pain. It's really hateful to dismiss what you are suffering in this way. The problems you have though are very tough ones and you might need to go to see a world class expert to sort this out. Don't accept being fobbed off you need top quality advice and then to consider, carefully get a different doctor.

[Barnyowl in reply to Avourneen]

Dear Avourneen,

I'm really sorry to hear that you're going through similar problems.

I have had a MRI which showed 'thickening', then the sigmoidoscopy where the instrument could not get up there. I had an enema which liquid could go through, but faeces are not liquid for normal people. I really feel like I'm being fobbed off at every step of the way. The bowel surgeons don't want to operate on a 'frozen pelvis', and the pain medics are trying to make out it's 'excited nerves' and nothing to do with the adhesions and stricture in my colon.

Could you let me know how to message you? I'm willing to try anything at this point.

Thank you so much for your support xx

[Minnie153]

Hiya,It sounds awful for you. I would suggest trying to find a endo centre that has colorectal surgeons working there too. This is often in centres that have general surgery department too. I think your surgery needs to be a multidisciplinary approach where the both surgeons would work together to address your problem and hopefully find a resolution to prevent further illness and reduce your pain.

Good luck xxx

[Barnyowl in reply to Minnie153]

Dear Minnie153

Many thanks for your message.

I had a multidisciplinary team when I was first diagnosed with stage 4 end. The seven hour surgery involved a full hysterectomy, removal of ovaries, and dissection of my bowel. I had amazing surgeons, the gynae is now in Dubai (possibly through recommending him to everyone I knew suffering from Endo).

My symptoms are all bowel related - bleeding from the back passage, constant diarrhoea and known stricture in my colon. I think the diagnosis of a 'frozen pelvis' and 'stage 4 endometriosis' is a cop-out.

The bowel surgeons don't want to operate on a 'frozen pelvis', and the pain medics are trying to make out it's 'excited nerves' and nothing to do with the adhesions and stricture in my colon.

I will need to pay privately for a second opinion, but I honestly don't know what type of surgeon I should call.

Thank you so much for your support xx

[Minnie153]

Hi, I would pursue colorectal surgeon but check out if they’ve got experience with chronic endo too.

Wishing you all the best in getting a resolution xx