Severe back pain despite widespread excision and Hysterectomy!

[Sandygirl6697]

Hi everyone. Having a bad day and feeling very lost.

Over the last 3 years I have had a couple of operations, first to remove ovaries and Fallopian tubes (this wasn’t performed by an Endometriosis specialist as at the time I wasn’t aware that’s what I had and also was very naive) hence I was in even more pain afterwards, second op performed by a very good specialist at a BSGE hospital which included hysterectomy (also was suffering from adenomysis ), bowel surgery and widespread excision for DIE.

Although most of the pain and symptoms were helped I still have severe lower back pain which goes into my buttocks and down my right leg, along with right sided pelvic pain. This is becoming increasing worse. I also suffer with chronic constipation and taking laxatives as much as I can along with following a very healthy diet. I have had an MRI which was reviewed by a specialist radiologist who noted that no definitive endo was found. There were several bowel “loops” noted 🤷‍♀️. I have had pelvic physio . The pain is as bad today as it ever was before my excision surgery , I feel at a complete loss but also that I can’t explain or expect people around me to understand when there doesn’t seem to be any reasoning for this pain. Sorry if I’m just feeling sorry for myself but I really don’t know what to do.

I have been to see my gp who is very good and tries to help with advice and I to also have an appointment at a BSGe centre next month although I feel I shouldn’t be taking an appointment from someone who needs it far more.

Feel free to tell me to get my “big” girl knickers on 😔.

[BloomingMarvellous]

Hi,

you said you've tried pelvic physio - so had I but also look at @leah_brueg ( instagram) on her list of podcasts the one with Dr Angie Muller think it's 52 or 57 . About an hour long .

Pelvic floor recovery and general endo management needs a lot of post operative care ; try looking at @healendo and her book of same title especially on gut ❤️‍🩹 . Get your hormone levels checked by GP but also your Vit D and Calcium levels as both are key for nerve and pelvic floor strength. Sometimes thyroid levels being low can affect pelvic floor strength and gut motility so if they haven't been checked worth asking about.

Many of us don't drink enough water to keep things shifting along especially with "loops" ! My pelvic physio upped it from my usual 1&1/2 litres to 3-4 a day . It really helps and actually my capacity to hold my wee improved not worsened. I use dessertspoon of chia and flaxseed in my daily natural yogurt along with grated bit of carrot, bit of fresh ginger , 1/2 apple, shake of cinnamon and bit of almond butter breakfast. Sometimes I throw in tablespoon of olive oil and shake of oats. I make several pots in one go and leave it in the fridge so not faffing every morning but it helps no end. If you are low on calcium a chopped date will boost that too . As I get issues with UTI's I add a teaspoon of bitter raw honey which has good record of reducing the associated bugs . It all helps. Sounds weird but tastes like carrot cake pudding 😂

[Sandygirl6697 in reply to BloomingMarvellous]

Thank you x

[MrsPaddingtonBear]

Hello

Firstly the only time “ big girl knickers” are required is post surgery , for as long as required , just long enough to say you won’t beat me and I can do this! This is only as obviously the daily big girl knickers are having a break and a stand in is temporarily needed. We constantly have to grin and bear it with this horrible disease so we wear big girl knickers every day. My symptoms started in my late teens. I didn’t get diagnosed till I was in my late 20s. I had multiple operations, scans, treatments etc many miscarriages and a ruptured ectopic. Finally after two years of treatment I had a total hysterectomy last October. This resulted in emergency bowel surgery as the womb was stuck to my bowel. It was 50/50 I’d pull through and I ended up with a colostomy bag. This will be reversed early next year. They found lumps in my womb during surgery, this was tested in lab afterwards and I got the cancer all clear in January this year. They also discovered that my “lumpy womb” was the reason I couldn’t carry a pregnancy, a bit of a bummer to discover after 20 years. Even though I always knew it was my fault, I didn’t need a medical confirmation. I suffer from chronic stomach ache some days, have a restricted diet and generally hate this little gremlin I carry around with me. What bowel surgery did you have if you don’t mind sharing. Have you been referred to a bowel surgeon? Perhaps that could be suggested to your gp. I used to get back and thigh pain when I had cysts on my ovaries but as you’ve had surgery that’s one thing to cross off the list. I’d definitely say further investigation is needed. Glad to hear your gp is supportive. Best of luck. Message anytime if I can help/listen

[Sandygirl6697 in reply to MrsPaddingtonBear]

Thank you very much for taking the time to post to me. I am so sorry to hear how much endo has effected you too you have been on a horrible journey like some many endo warriors . It’s so cruel and devastating.

I have suffered for many years (starting when I was just 12) with “period issues” but was never taken seriously as it was just periods and all women had them. I have had two children , both grown up now but it did take a very long time to conceive with my first. It was only during Covid that anyone took me seriously after an ovarian cancer scare. From that time on the endo just went from bad to even worse. I couldn’t function so in the end I had to find the funds to go private which I am grateful for.

I had a bowel resection during my hysterectomy by a bowel surgeon, along with extensive excision. I had chronic constipation before but now it’s even worse along with pain when I do manage to go. But am thankful that I did not have to have a colostomy and know that in that case I was very lucky. I really hope and pray for you that all goes well with the reversal and that you may find some relief from that.

Not sure how the appointment will go at the BSGE centre as in theory there is no longer any endo.

Thank you for sharing your story with me

Take care . Your massage will help to keep me strong x