Can’t sleep: Back again.. can’t sleep my... - Endometriosis UK

Endometriosis UK

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Can’t sleep

tinkerbell971 profile image

Back again.. can’t sleep my back and left side is hurting so much 😭😭 I’m back at the pain clinic on Thursday and I want to demand a scan of my pelvis/hips/lower back. How can it be this bad I am 21!!!! I really want to push for another surgery but I feel like nothing will be found as only a small patch was found in September 17 and it was a specialist so I don’t think he would have missed it. Don’t really know what to do I just know I can’t carry on in this pain. It’s always worse of a night time. Also my bloating is so bad I’m currently dieting eating only 1200 calories a day and the bloat doesn’t seem to have gone down at all. I have two sets of clothes that fit me because my endo belly has just gotten so bad.

Sorry for the rant I just feel awful and wish something would be done to help me 😩😩😩😩

25 Replies

It can always come back. I’ve never known anyone to have surgery and be pain free. If you are not still under gyne then request to be referred again. Its a horrible condition. I’m suffering everyday with my pelvis and hip. Not so bad with the bloating as I’ve gone gluten free. Perhaps try that. People are saying I’m so skinny but I’m back to how I was before the bloating happened. It’s hard at first as things like bread and pasta taste different but now I prefer gluten free products x

I’ve tried gluten free and it didn’t really make a difference plus I found it so hard as I’m so fussy with food. I’m scared to be referred back to gynae for them to do a lap and say it hasn’t grown back yet x

My first lap was mild endo and cysts. Second lap was far more worse and had scar tissue from first lap. I was shocked how bad it got after just 2 years. You just never know what is going on inside. Go back to gyne and discuss options or go to gp and maybe they can ref for internal and external scan or even mri. I do know every time they go in it will cause more scar tissue. Now this time around he suspects it’s attached to my diaphragm as been having different symptoms x

I think I’ll ask my pain doctor if he can refer me for an mri first, I don’t really have time to be having another op at the minute I’m 6 months away from qualifying as a nurse so need to have as little time off as possible x

Hi tinkerbell, can I just ask how long you tried gluten free? It can take at least 3 to 6 months for any inflammation to calm down that it has caused. I tried for 6 weeks initially thinking it wasn't working, and gave up. When my energy medecine practitioner told me I needed to try longer I found it worked and my tummy is far less bloated now. I only had a problem recently because of high levels of stress (hubby made redundant and 2 house moves in 6 months) which I think caused ovarian cysts to come back. There are so many options out there, Tesco, Sainsbury's and Marks and Spencers have a good range. Also try Asda. I don't like the bread, but find I can tolerate it if I toast it, so most sandwhiches get toasted for me nowadays. I do hope you find some relief soon. Good luck. xx

marti323 profile image
marti323 in reply to Laura_T

Hi Laura have you seen the responses I posted on here. I think it might help you!

Laura_T profile image
Laura_T in reply to marti323

I will have a look now. Thank you x

Hey, I also get terrible back pain which wraps around my side in the early hours of the morning anywhere from 3-4.30am and it doesn’t go so a lot of disrupted sleep for me.

I have had it for almost 9 months on and off now and my recent & 3rd lap in Dec I had extensive adhesions along with regrowth of endo. I thought this maybe causing it. Nope! It’s back and even more vengeance :(

I’m going for a scan on my bladder ureters and pelvis follow up app tomorrow and it’s being investigated as if I go for a wee I have pain and the side/back pain eases when I have a wee.

It’s horrendous and the fatigue is even worse just got back into bed as I feel like I’m falling asleep sitting up

I had adhesions when I had my first lap they were pulling my bowel towards my left ovary but they were all removed during the lap. I’m definitely going to ask for a scan x

My adhesions where attaching my bowel and stomach to my uterus hence why I thought it may be causing the pain radiating to my back and side! I hope we get sorted soon! Yes ask for some scans x

It’s hard isn’t it. Thank you hope your feeling ok x

Hey ladies! Are you guys getting laparoscopy surgeries done by an excision specialist? I’ve read great things about patients who had multiple surgeries until they come across an excision specialist. Which then they were pain free for years. I found a Facebook page that had a wealth of knowledge and a list of excision surgeons. Please take a look! It may be worth it to get to the right doctor! The page has rules about not asking questions the first week until you’ve read all the super informative articles. Let me know if you find it useful!! It’s Nancy’s Nook endometriosis page! Or if you have been on there and have been to a Nook doctor. What are your comments??

Dakrav profile image
Dakrav in reply to marti323

I just joined it. Thank you. It’s a wealth of knowledge. Now I can understand where I need to really go for check ups. Thank you.

I will pass it over to everyone else like you just did

I do not have Facebook how else can I see this?

Dakrav profile image
Dakrav in reply to tinkerbell971

I don’t know. I can put up this question after a week since I am a new member and not Allowed before that

marti323 profile image
marti323 in reply to Dakrav

It might be worth it to get Facebook for this sole purpose. Let me know if you want the list of doctors. I can try sending it to you. dakrav yes please send it along. It’ll help a lot of women, I hope.

Yes could you send me the list please

I’m not sure I can upload the word document. Should I email it?

Dakrav profile image
Dakrav in reply to marti323

I am so bad at this😁

Yes or you can send me it in a private message on this. My boyfriend does have Facebook do you think I could get him to follow the group?

Dakrav profile image
Dakrav in reply to marti323

The info is there on Facebook. And it’s so vast you might want to join it because everyone lives in different places. My mind just blew away. And it does mention people who have had unsuccessful surgeries and why.

marti323 profile image
marti323 in reply to Dakrav

Dakrav right? I was on this forum first and found that group later. I was sooooo happy to have stumbled upon it and in the most random way possible. That's why I really feel the need to share with all endo sisters about it. They have 50K followers. I have been nonstop reading people's comments, reviews, stories. Some people still struggle with issues after having endometriosis removed, such as pain from scar tissue from surgery, pelvic floor disorder etc. But the page covers a lot of that. I think it's the best thing there is out there right now for endo sufferers. Just a pointer, you can go to the Files section and there's tons and tons of articles. Then the Units section has alot of information regarding Surgeries, Medications, etc. There's information about Lupron as well, which my old dr tried to put me on. Thank goodness I didn't go on it!

marti323 profile image
marti323 in reply to marti323

Also Tinkerbell, I don't think the sweet nurse lady that runs the page has this info anywhere else other than the facebook page.

Aww, my sons are 19 and 23. And if you were my daughter it would be just so sad. I am so sorry honey. Big cuddly hug. What part of left side is hurting? I might respond late since I am traveling.

tinkerbell971 profile image
tinkerbell971 in reply to Dakrav

Thank you so much. I feel abit better now I think it’s just a flare up I’m having x

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