Help! No more surgical options for bowel adhesions. Any advice appreciated x

[Barnyowl]

Dear Fellow Endo Warriors,

I'm reaching out to ask about pain relief and help with debilitating bowel issues. Is anyone else post-hysterectomy and Endo adhesions still compromising your life? If so, I really need your help xx

Here's my story ...

I had a complete hysterectomy and ovaries removed about 13 years ago (age 36) due to stage 4 endometriosis which resulted in a frozen pelvis and extensive bowel damage.

After a long history of botched operations, I found an amazing surgeon who worked with 2 bowel surgeons and a vascular surgeon to free me from pain for the first time in 18 years. The endometriosis was also found in my kidneys and liver. I suffer from very high blood pressure (family trait), so could not go on HRT.

My surgery involved a complete hysterectomy and both ovaries removed. I had 8 years relief, but the pain has come back with a vengeance.

For the last 4 years, I've been suffering with bowel problems - excruciating daily pain, sudden onset diarrhoea, constipation and bleeding from my back passage.

I was sent for MRI scans which showed significant narrowing in my colon, so I had to go for a sigmoidoscopy/biopsies The narrowing of my colon meant that the camera could not go up there. Due to Covid, the only telephone advice my consultant told me was to take daily laxatives.

Sadly, the sigmoidoscopy left me with a severe infection and multiple antibiotics to clear and 5 weeks off work.

As Covid has progressed, so have the infections. I have been treated for 'diverticulitis' with multiple courses of antibiotics (2 weeks each time) every time I have a massive flare up (crippling pain, high temp, bleeding, high heart rate).

I have been back to see my consultant and he has told me that there are no surgical options available. Operating on a 'Frozen Pelvis' once was a major feat, they would never try again. I asked about pain relief and he said he would refer me to their pain clinic. I told him that I'd already been to a pain clinic, and they said there's nothing they can do as it's a structural problem.

He suggested I went for an enema scan to see how blocked it is. Ever since, I've been in excruciating pain, I can't drive as there's no chance of me doing an emergency stop, and I'm edging on incontinence (losing control of my bowel about 3 days per week).

It's six weeks later and still no response. My company want us to go back to work now Boris is lifting restrictions. It's completely impossible for me to do.

Any advice/help would be appreciated as I don't know what way to turn at the moment.

Lots of love to you all,

xx

[EndoJaz]

Hi. It’s so horrible what you have been thru and still no relief. I had a hysterectomy 4 yrs ago and further surgery since and I am still in pain but have been told the best option now is to have physio to stretch apart the scar tissue and adhesions because apparently my tummy is full of them. So that treatment will begin on 20th. It’s gonna be so painful but I have to give it a try. I have a solid mass on my left ovary and a hernia so scared. My GP referred me to the physio for my prolapsed bladder. It seems the more surgeries we have the more problems occur. A very viscious circle isn’t it. Can’t believe I am 46 and have suffered since aged 12 and not much better off. Really hope you get something sorted as you can’t go on like this xx

[Barnyowl in reply to EndoJaz]

Hi EndoJaz,

I thank you for your reply and am so sorry you're in the same boat as me xx

I'm with you in being the kid who passed out at aged 13 when my periods started. My first surgery was a 'grapefruit sized' ovarian cyst aged 19. Botched up delivery of my daughter when I was 25 (vaginal delivery but they slashed me as the cord was around my daughter's neck and left me with a major hematoma leading to surgery and blood transfusions). I had 4 miscarriages subsequently and my marriage broke down when I was 27.

I really feel for you though, as you seem to have had the same botched up surgery that I had when I was 30. The so called gynaecologist, treated me like an idiot for years until I begged him to try keyhole on me. When I came around, I was slashed from side-to-side and he said "how the hell could you walk around like that?" He didn't have a bowel surgeon on standby during the surgery, and covered his backside by saying no-one would be able to operate on me.

Age 36, I was so desperately ill where I was having 25 day periods which were excruciating, my bowel didn't work properly (I was throwing up regurgitated food). As a single mum from when my daughter was 2 1/2, It was a very difficult decision to make (my previous consultant said I wouldn't come through surgery) , but I paid privately to see a specialist.

He did both surgeries through the NHS. The first was keyhole to see what he was dealing with. He came to me and said it was bad in there and recommended a complete hysterectomy with ovaries too. After a 7 hour surgery, involving two bowel surgeons, he told me the previous surgeon "had a lot to answer to'.

He was an amazing guy and gave me my life back for 10 years.

Endojaz, the best analogy I've heard about adhesions is they're like cling-film wrapping around your organs. The best way I can describe them is if i turn over in bed, or stretch, it feels like velcro ripping. Physio may be useful for the bladder problem, but I strongly recommend that you have a second option.

I've been told off for recommending a gynaecologist in this forum, but what you're describing was similar to my story 12 years ago .

Sending you lots of hugs xx

[Angellouise]

I’m so sorry you are going through so much. Have you tried CBD oil? Lots of people get pain relief from it. Have you seen a pain specialist? I wish you luck

[Barnyowl in reply to Angellouise]

Hi many thanks for your response. I have tried CBD oil, but it didn't help much. I went to a pain clinic at my doctor's surgery and they said there isn't much they can do because it's a structural problem. I am supposed to be going to a different pain clinic at the hospital, but as usual, there are no appointments because of Covid.

[CryBaby91]

Hey sweetie, have you tried a heated pad? I find it's the best relief for my lower back and pelvic pain! I can plug it in and just lay down on it has a timer so you can fall asleep without any worries. I also use a TENS machine, it doesn't get rid of the pain but it helps a little xxx

[Barnyowl in reply to CryBaby91]

Hi, many thanks for your response. I have a hot water bottle permanently strapped to my belly and back! Not the best in summer, but it is the only way I can get any sleep of a night. The TENS machine didn't help much. The best way I can describe the pain is it's like velcro ripping apart. I'm like an old woman trying to get out of the chair! I'm sorry you're going through it as well. Sending lots of hugs xx

[CryBaby91 in reply to Barnyowl]

You may want to get yourself the plug in pad babe! I love mine, I can lay it flat out and it is lovely on my back, really helps me fall asleep and I don't have to mess around filling a hot water bottle every few hours I still use the hot water bottle on my belly but the pad is way safer for my back, less worry over rolling on it in the night and bursting it, or it just going cold on me and waking up crippled! I paid £20 for mine on Amazon, it's been a life saver. Has a timer so it turns off automatically, less risk of burning and stuff. You can even use it damp xxx

[MrsMarlene]

Please do have a look at Serrapeptase tablets. They have reduced my pain and flare ups significantly! I buy them from Holland and Barratt and take 2-3 each morning. If you want any advice just message me. Good luck 🤗

[Barnyowl in reply to MrsMarlene]

Hi, thank you for your response. I've not come across these tablets, so I'll definitely give them a try. I go to Holland and Barratt after I've been on antibiotics to get the pills to put the 'friendly bacteria' back in. I appreciate your support x

[astrocat in reply to Barnyowl]

I take these too, and they seem to be really helping with adhesions! Good luck. X

[Hope698]

Hi Barnyowl, I'm sorry to hear you're in so much pain, I really feel for you. I had a total hysterectomy 4 years ago aged 36 and I now have major bowel and bladder issues. Have you been checked for a prolapsed colon and fissures? I have adhesions which cause pain in my tummy but the surgeons won't touch them as they say more would grow back. I was sent for a test were you drink barium and then try and go to the toilet, it shows what is happening in your your bowel and back passage. I had colon surgery in oct 19 but it didn't work, I ended up sending photos to my surgeon of what happens after I go to the toilet (not the best moment of my life!!) and I'm now waiting for more surgery. I have to take laxatives daily. I also use buscopan, it's amazing for easing the stomach pain. I also take Tramadol and Amitriptyline every day which makes constipation worse but does help with pain. Other things I find helpful when it's bad is a warm bath and using wheat bags. I also have a tens machine which sometimes helps depending on how bad things are. Xx

[EndoJaz in reply to Hope698]

It seems one thing you have done causes further issues, same for me, had total hysterectomy 4 yrs ago plus 5 other surgeries and now have a prolapsed bladder and scar tissue and adhesions. Having physio to try to free it up a bit. Will let u know how that goes. X