Has anyone had chronic pelvic pain? and n... - Endometriosis UK

Endometriosis UK

69,900 members51,852 posts

Has anyone had chronic pelvic pain? and neuropathic pain? Would love to be able to chat to others as feel alone.

alicewiffen profile image
10 Replies

HI just wondered if any of you have suffered with chronic pelvic pain ? apparently a burst cyst /trauma has caused me this and really want to know if anyone has suffered so I can have some advice?

I have nerve damage apparently and

Feel really lost and alone with every day in agony. I am currently living on morphine from chronic pain but rushed into hospital for impaction due to it and have been to the toilet in 12 days!

Thankyou so much xxxx

Written by
alicewiffen profile image
alicewiffen
To view profiles and participate in discussions please or .
Read more about...
10 Replies
Soph1992 profile image
Soph1992

Hope you are ok💖

I’m new to all of this, had a lot of pain on and off with my periods but the last 12 months I’ve suffered quite badly and get pelvic pain every day! I think I have cysts I think one may have ruptured 2 weeks ago and I haven’t felt the same since.. xx

alicewiffen profile image
alicewiffen in reply to Soph1992

Oh bless you it is horrific pain and I really really hope you get it sorted out.

I have it severely every single day but have been diagnosed but trying to keep pain under control at the moment xx

Amyjane88 profile image
Amyjane88 in reply to Soph1992

Sending hugs xx

alicewiffen profile image
alicewiffen in reply to Amyjane88

Thankyou so much!! ♡ xx

Nicjane profile image
Nicjane

Hey!

In fact I goy pelvic pain right now (not officaly diagnoised) its a nagging/pulling sensation on my right side. Also very much consitpated its hard to see if the pain is from consitpatoon or something my bm arw like mini pebbles:( i hope youre doing ok! Where is your pain located? I heard strong painkillers dont help consitpation wish there were more out there for people like us xx

alicewiffen profile image
alicewiffen in reply to Nicjane

Thankyou so much for your reply. and yes I got impaction due to morphine which is a nightmare because I am told to keep taking it even though it does this to me :( had to have drips and injections and a billions laxatives and I'm sure that's making me have even more tummy pain! It's unfair isn't it!

I really hope you get better soon and my pain is central tummy to right hand side and it's severe cramping and pulling inside me.

with the constipation I just had sharp stabbing pains so totally different. such a nightmare that the only painkiller that helps me also causes more problems!!

xxx

Amyjane88 profile image
Amyjane88

Hi hun. Sorry your having a hard time. I am waiting for my lap . It's next week. They think I have endo as I have chronic pelvic pain. I have had 3 spinal surgerys that have left me with lots of nerve damage in my legs. Never pain is the worst!!! I was on morphine for years but was still in pain. So I decided to come off it. Now I take cocodamol tramadol paracetamol and gabapentin. It works better for the pain in my case. Have you been to a pain clinic ? Your doctor can send you there. They are the people to see they have given me never block injections in the past that have helped.

I wish I could give you more advice and I hope you feel better soon xxx

alicewiffen profile image
alicewiffen in reply to Amyjane88

I had exactly the same and they found no endo just nerve damage so diagnosed with chronic pelvic pain and neuropathic pain due to a hurt cyst.

It's literally changed my life and i am in constant agony and now the morphine doesnt seem to be doing much either !!

I am being sent to a pain clinic but I really don't know what to expect! really nervous.

I have been given anatryptaline (don't know how to spell it.) and makes me tired!

Thankyou so so much for your message and the time you took to write it! feel quite alone and scared with it all as just want the pain to go away! I am so sorry you have been through so much and I really hope your pain ends asap!

xxx

Amyjane88 profile image
Amyjane88 in reply to alicewiffen

Most welcome. I also hope find something that helps. Yes I also tried anatryptaline to but I did not like it for the same reason. I got to that point with morphine to ... that is was not doing anything thus why I changed Meds. Hopefully you will be seen soon take care xx

rogelia profile image
rogelia

Well, this theme is difficult as (from my opinion) the causes of chronic pelvic pain and neuropathic pain can be so different from one patient to another.

In my case, I was diagnosed with endometriosis when the doctors detected a chocolate cyst in my left ovarian (and I also have a endo nodule close to the uterine taurus). The cyst was about 7cm but my doctor did want to completely avoid surgery if possible, and he first try to manage my endo by inserting me the Mirena IUD.

Mirena was fine and my cyst shrunk and I improved. Although, something happened when it was inserted and I had vulvodinia for long time. It had improved, but probably one muscle got tense and I did experience neuropathic pain for long time.

Right now I am quite fine. Sometimes I have some discomfort, and some months are bad (probably to bad ovulation). But in general terms, I am more or less fine.

Anyway, besides the Mirena for the endo. I also went to a pelvic floor physiotherapist since I was told that some of my symptom were also caused by tension in the area. And I have improved through the time :)

I do not know if this will help, since probably the cause of the pain is different for one person to another.

Also, I do still have a chocolate cyst of around 4cm in my left ovary. I do not know if that has a bad effect on me. I would really like to understand why the hurt cyst caused pelvic pain on you. I am surprise with no endo you have nerve damage! :O How could that be possible?

You may also like...

Writing an article about neuropathic pain for a medical school magazine - if anyone has any experiences they would be willing to share.

issues and this issue has the theme of pain. I was wondering if any of you have been told that some...

Total Pelvic Peritoneal Excision - Has anyone had this?

things first. Has anyone had this procedure on the NHS? If you have had this, have your symptoms...

Anyone had epidural / spinal block for pelvic pain?

Is it possible to have pain after one of these, or will it definitely stop the pain? Obviously I...

I've been prescribed Amitriptyline for pelvic pain. Has anyone had success with this medication?

flare. Has anyone had success with Amitriptyline. I'm hoping it will help with the leg pains 🙏

Has anyone had a lap to separate bowel, uterus and pelvic wall?

brilliant for pain and restoring energy levels after my last lap. I am getting sciatica nerve like...