Adhesions/Endo pain returns ten years on from full hysterectomy - HELP!

[Barnyowl]

Hi, I'm new to the group and am reaching out for your support.

I had a complete hysterectomy and ovaries removed about 10 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.

I honestly thought this was the end to my problems but six months ago the pain came back with a vengeance.

Once again, my bowel is seriously compromised but I have been told there are no other surgical options and the pain relief (co-dydramol and amitriptyline) are not touching the pain.

Apart from pain, I am completely exhausted all of the time and suffer fast onset diarrhoea most days, which is challenging as I work about an hour's drive from my home. I am a single mum, so giving up work is not an option.

Can anyone else relate to me and if so, is there anything you can recommend to help with the pain, bowel issues or any surgeons who have amazing abilities who can give me back any semblance of a life?

I appreciate your support xx

[bighug]

Hi, sorry to hear you’re suffering again, unfortunately I can’t give you any advice but I can let you know you’re not alone. I too have had a total hysterectomy after severe endometriosis, my pain came back after only several months, I have diarrhoea all the time too, along with pelvic and lower back pain, I’ve just be advised to stop my HRT for a while to see if that helps. Every day is just a struggle! Gonna see if that helps, I’ll try anything, to get a pain free day!

I hope you get some good advice and help, keep in touch

Big hug x

[Barnyowl in reply to bighug]

Thanks Big Hug, it’s good to know I’m not alone!

I really hope you find some relief too. I only found out recently that there is no cure for endometriosis- this is different from what I was told back in the day. I guess it’s a case of just soldiering on!

Take care xx

[bighug in reply to Barnyowl]

Unfortunately not, like you say we just have to soldier on, on a plus note, it is more recognised now and women are getting more help and there’s more research going into it. I’ve been to a few meetings with other ladies, it’s so good to talk to someone who understands.

Hope you’re having a good day, take care x

[Billyfluffy]

Hi there you are not alone I too have had a hysterectomy 12 years ago got lower back pain on HRT have been to see consultant and when did an internal very painful 😣 having an MRI tomorrow then see consultant next week to find out what’s happening .

Will hope to get some answers

Kindest regards

[Barnyowl in reply to Billyfluffy]

Dear Billyfluffy,

Many thanks for your response, it really helps talking with people who know what you’re going through.

I really hope the MRI goes well for you and they can find a way of relieving some of your pain.

Let me know how you get on.

Take care xx

[Billyfluffy in reply to Barnyowl]

Hi there thanks for your lovey email. I shall let you know how I get on .

Kindest regards

[FiBeee in reply to Billyfluffy]

I’m so sorry you’re still in pain. The same think happened to me four years after my hysterectomy so I really feel for you. I’m interested to hear you’re having an MRI. I’m through the menopause and have had a hysterectomy but my endometriosis now seems to be on my colon, liver and gallbladder. I’m keen to have an MRI instead of yet more surgery. Would be interested to know if endometriosis shows up.

[Billyfluffy in reply to FiBeee]

hi there I’m still the same I have been waiting since 2019 I have a bladder pro lapse the MRI showed up adhesions on the bowl loops however. I have swelling in the lower back left leg ankle . I need to have my gallbladder removed have a cluster of stones . My left kidney is damaged not working as well as it should be due to a stent years ago . On top of this I have a functional tremor and I have a bad gait I’m on a mobility Scotter unable to walk toofar . I’m on tramadol , trans dermal patches and oramorph

I’m under the care of a pain clinic . I had injections in lower back only lasted a few months am waiting for more this time they will burn the nerve endings .

Had bloods done and another MRI , having had a hysterectomy and ovaries removed many years ago it’s frustrating to think the Endo is back I believe it is and my ex consultant believed it in 2019. Been waiting a good while now . I’m resigned to the fact that have had many surgeries that they will not do any more due to adhesions . Pain management is the key .

Hoping to have a consultation soon was due to have one last week waiting 6 months due to doctors strike hopefully I will find out the MRI will bring up something . Been to urologist they won’t do anything as I’m in so much pain they want Gyne to do something first.

When I find out more will let you know

Regards

[FiBeee in reply to Billyfluffy]

You poor thing. You’ve really been put through the mill with so much surgery. I really hope they get your pain relief sorted soon. Big hug

[Billyfluffy in reply to FiBeee]

xxxxx big hugs to you too thank you

[Barnyowl in reply to FiBeee]

Thank you so much FiBeee xx

Sadly, I’m trapped in agony and my mobility is becoming less and less. I have been diagnosed again with a frozen pelvis and colitis now, and there are no surgical options available.

I’ve done loads of research and cannot find anyone who will operate in a frozen pelvis a second time.

I really appreciate your good wishes, and hope your journey with this horrific disease is more hopeful.

Sending lots of love and hugs xx

[Barnyowl in reply to Billyfluffy]

Dear Billyfluffy,

I’m so sorry to hear that you’re still suffering so badly. 😞

I can relate so much. I have a disability blue badge now which helps parking near supermarkets and toilets, as the pain in my belly and back is excruciating and my bowel problems are significantly worse.

The consultation with the ‘pain clinic’ was laughable. It was like going back to the dark ages when I was told ‘everyone gets period pain’. I kid you not. This guy was trying to tell me that adhesions/nerve pain doesn’t hurt and having diarrhoea with significant blood loss most days is normal??? So, yeah, I didn’t think it was worth the fight.

Like yourself, I’m resigned to the fact that I’m trapped like this and it’s only going to get progressively worse.

Although the ‘consultant’ (I use the term lightly) from the pain clinic authorised Tramadol, my doctor is reluctant to prescribe it as he envisages the pain will get worse over time.

The only positive that has happened to me was Covid, as my company has allowed me to work from home. On the plus side, at least I can still pay my bills, but the downside is it’s a very lonely life now.

I really hope they sort out your kidney problems. In my experience, it seems like the consultants want to pass problems on. Gynae won’t deal with me as I’ve had everything cut out, yet bowel surgeons just say it’s a frozen pelvis, so they refuse to operate either.

Keep strong xx I’m sending you lots of love and hugs xx

[Billyfluffy in reply to Barnyowl]

Dear Barnyowl thank you for your lovely message. I also have a blue badge too I lost my job too as a lecturer. I do feel trapped as there are days I can’t get out of bed as the pain is so bad . Slept most of the day yesterday and most of the day today . Like us all here we have to endure . There is always someone worse off . Sending love to everyone

I suffer with urine infections was in hospital with sepsis last May have to drink lots . The positive point is I went back to slimming world got to my goal weight lost 4 stone .

The consultants like to pass the book I had been private for many years could not afford the £439.00 a month now on the NHS I’m still waiting .

I’m sorry your in pain too and with your bowel movements. I can’t go for days lol. I’m on dixotel to help on trans dermal patches they have been a life saver . Tramadol does help and voltoral suppositories have been helpful too. They are a anti inflammatory. Hot water bottles are so good

I wish you well and I’m always here if you need to chat . Remember you not alone . Wondering about this new drug out for Endometriosis . Can’t do anything with left kidney as it works and their words were “if we do anything else it won’t make it any better. “ it’s working I’m thankful for that .

I’m thankful everyday have a wonderful husband Twins who ate 16 . They are great .

Catch up soon x

[Barnyowl in reply to Billyfluffy]

Dear Billyfluffy,

I’m sorry to hear that you’ve lost your job, but very proud of you for losing so much weight - you are a superstar xx

I live with my water bottle and have two replacements for when they fail! I also have one in the office on the odd day that I feel well enough to go in.

I keep fighting for my daughter, and that keeps me going.

Sepsis happened to me in March last year too. I hadn’t been well for a while and I probably waited a bit too long to see my preferred GP who understands my illness. The sheer day to day exhaustion is something I cannot really explain. I got Covid last year which seems to have made it significantly worse.

I’m here for you too xx Wishing you the best on your journey xx

[melanies]

Hi! I feel like we need a separate group for those who have had a hysterectomy and then have endo return- I relate to your story and those who have replied already. I had a hysterectomy 5 years ago (aged 42) and thought I was cured but have recently had the endo pain return. Thankfully for me the pain is not too bad yet and I’ve not yet been to see my GP about it but I’m now trying to get my head around what spending the rest of my life fighting this disease is going to look like!.... your symptoms sound really difficult though and I hope you can get something sorted out soon. On your question about finding a surgeon/ specialist I have seen others on this forum suggest searching for a BSGE specialist/ centre. I’m not sure what BSGE stands for but it seems that is a good step towards finding a specialist for endo. Another thing I have seen mentioned is an endo diet for reducing pain and symptoms. Again don’t know a huge amount but was thinking (given that my pain isn’t too bad at the moment) that I might try looking into it to try and keep it under control. I wondered if something like that might help for your bowel difficulties too? Good luck and please keep us updated with how you get on! 🤞xx

[Billyfluffy]

Thank you melanies for your email will let you know how I get on fingers crossed

Kindest regards