I hopefully have a date next month for a laparoscopic Hysterectomy - waiting for confirmation in writing. Have been waiting for nearly 2 years on NHS.
I am age 40, living in Scotland. I had none of these Gynae issues until about 3 years ago. Since then, I have had heavy bleeding, cramps and pelvic pain. Prior to that I was on the mini pill for 20 years with no bleeding at all, so it has been a shock.
I had a Hysteroscopy 2 years ago because they thought I might have a polyp inside my womb. Nothing found and no answers. Since then I have tried various hormones (Norethisterone and Provera) but I had to stop taking these due to weight gain and side effects, hot flushes, etc.
In January I had a Colonoscopy following bowel pain and blood detected in stool sample. Nothing found inside the bowel, but I am having the most agonising symptoms. I suspect that I must have significant Endo inside with problems around the rectum.
The symptoms that are most upsetting are -
Pain during anything remotely sexual (just causes pain and bleeding) even a thought is too much because I get painful twinges instead of good feelings! I am not able to use any kind of toys or anything right now.
Also, in the past 6 months or so, whenever I have a bowel movement, I am in agony. It started off that this was occasional, along with the bleeding, but now it is every time. The only way that I can describe is it feels like barbed wire inside, or like trying to pass broken glass. I am crying with pain daily now.
Does this sound like bowel and related area Endo? Could it be something else? I am frightened and my bum hurts all the time, as though I am sitting on something sharp.
The other thing that I have noticed recently is that I am suffering with fatigue. About once a month, I am getting joint pain, and my arms and legs are aching and feel heavy. Is this connected? I wonder if it is inflammation?
I work full time but have had a few absences already this year. I am counting down the days until I hopefully get my operation and some answers. I know that they can't tell me until they look inside.
Does this sound familiar to anyone? What was the outcome? I am hoping that I can share my experience after surgery in a few months, when I know what has been going on!
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Kittie5117
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I also have the same symptoms of pain when opening my bowels, however I have Crohn’s disease so every consultant blames this despite my Gastroenterologist saying those scans and bloods are clear. I am convinced my Endo has spread to my bowels! And anything intimate is also off the cards for me - don’t feel bad about that!
I do hope you get your surgery soon so they can investigate and find a cause for you ♥️ I know we don’t want to be sick, but having answers and an explanation can help us to feel better in some way.
In the mean time if going to the toilet is an issue try looking at your diet. Easy to digest food, nothing too rich, avoid seeds and foods with skins like peppers. It might help? I know a change in my diet has helped my Crohn’s and made going to the toilet a little easier, not perfect, but a bit better.
Do you think they might operate on my bowel at the same time as they do my laparoscopic hysterectomy, or will it depend what they find? I am not sure if I would need to ask in advance (and do another one of those bowel prep things) but I would be willing if they might be able to help solve my problems!
That is good to know. Will see what I can find out and hopefully can post to tell my story after the op. The date that have been given is in 3 weeks time.
No, I haven't had a scan. I don't have a diagnosis, it is dysfunctional uterine bleeding and severe pain which has gotten worse. Originally I was due to have Endometrial Ablation, but I have begged for a Hysterectomy.
I am told that the operation is called laproscopic Hysterectory and that they will remove the womb (aiming to keep ovaries but we will see . . .) and treat any endometriosis if that is what is going on. With the bowel symptoms in the past 6 months or so, I am worried that it is endometriosis and is attached to the bowel too.
Am anxious about what they will find, but also want to know what is going on!
You have all the symptoms of deep endo and a typical back story of years of medical treatment allowing it to progress while symptoms are suppressed until they become severe. A hysterectomy isn’t the treatment for this. Severe endo usually involves the back of the uterus being stuck to the bowel with the ovaries often drawn in and stuck to the fibrosis and sometimes a hysterectomy can be appropriate but in this scenario it is a very complex operation. This requires expert surgery in a specialist endo centre.
I know appropriate treatment is more difficult to access in Scotland but you need an MRI to assess the depth and location of any deep endo as this can’t be established at a lap. Before this surgery be sure to discuss and confirm that they won’t touch any deep endo or attempt an hysterectomy if you have it and they will refer you on to a specialist centre for imaging and expert excision.
Thankyou so much. I got a date through in the post, confirmed in writing for 6th March. Will make sure I discuss all of these points ahead of surgery x x
We're not allowed to name surgeons on here but google them to see if they have any endo expertise declared on their profile. Feel free to dm if you want to discuss further.x
hi kittie I like you had blood in feaces clear colonoscopy. Had a lap last April found deep infiltrated endo in the bowel so much so I had to have surgery this year to have a bowel resection I only had an mri as they wanted to know how deep and to what extent and whether it effected my bladder or other organs as I have a frozen pelvis where all of the organs have lots of fibros tissue glueing them together had a large chocolate cyst ovary taken away and the cells taken to histology. All the endo was like purple black on the photos taken during lap and. Also all my nerves wrapped around my pelvis too so get siatic pain pain in groin right down to my knees restless legs. I’m surprised you have had to wait like two years from my emergency lap last year I would only need to wait a year for my bowel resection. I may have to have a stoma bag but I’m not fussed about that at all just want my life back. I’m 38 next week if my other pains don’t go away which will be highly unlikely the only way for the pelvic and groin pain my friend said is to have hysterectomy so will have to wait for that surgery as my surgeon won’t do the both together as will have too many internal wounds and as I had sepsis after my lap last year choose luck
Wow, reading your story, I just said some swear words that I can't write here! Goodness me!
You are 2 years younger than me. What you are describing sounds horribly familiar.
Yes, reading between the lines in the replies here, I understand that the surgery would probably be one thing at a time. I know that the bowel stuff is risky due to potential for contamination (your sepsis?) and I suppose the Hysterectomy is enough to be doing in one go.
I am hoping that once they look inside my tummy, they will be able to see the extent of whatever is happening. I do honestly feel like things are stuck together in there. Its difficult to explain to people because it sounds a bit dramatic, but we know our own instincts.
I will ask prior to my surgery, I would be willing to have a stoma bag if it meant that I could get on with my life again (as you said too).
The worst symptom that I have at the moment is severe pain going to the loo. Thankfully my bladder feels okay but my bum feels like passing broken glass!
I just hope that they can fix whatever the problems are. Good luck with everything for your own health x
Hun to be honest same here with toilet issues but my bladder I literally have to left my tummy up to go for a wee as I’m desperate but only little bits come out but once I lift my belly it’s strange it comes away more freely . As for bowel the pain is severe going and it doesn’t help I have an anal fissure. And also piles from all the straining have done over the years and then sometimes I have strained that much I get a weird sensation in my back which feels like the nerve pain . Am wishing you all the luck in the world. Hun the thing is if they go in and you’re all stuck they may have to forgo the hysterectomy as all in all it depends how the endo is and what’s wrapped around the organs so I do feel for you so much xx I was in my early twenties when I started to get ovarian cysts but looking back they were probably endometriomas and that’s probably why I bleed so heavy had severe pain couldn’t walk . So much so the out of hours doctors where like you can’t go on like this and said I needed the mirena coil. I think I had my first one put on eight or nine years ago that one only lasted two years as it moved out of place. This one I have had for almost five years. Instead of having periods last nine or so days and being heavy I don’t get a bleed apart from Last January bleed heavy clots lasting nine days and then I think I’m pretty sure have another endometrioma as started bleeding last week again. Also in my twenty’s saw a gynecologist he was old and basically felt my insides thank goodness my mum was in the room but behind the screen I was in agony but he said oh your fine then come 15 years later have severe endo and that’s why I feel they dismiss youngsters well they did back then. I was really surprised though that when I had my lap there was an 18 year old on the same ward. Bless her she had severe symptoms and I couldn’t help but over hear her say to the consultant as using curtains isn’t private you can still hear that this poor young lady was going to be freezing eggs so she could have IVF as she really wanted to be a mum. I’m long passed that to be honest. Don’t have a bf just fur babies three bunnies two kitty’s they are my baby’s and keep me company. I get to take out my nieces and nephews at times too. So it’s not like there aren’t little ones in my life just glad can give back lol 😜. Xxx
I have bowel issues and nothing was found on my colonoscopy. I am in the midst of endo belly and feel like I have a balloon inside me. It's a horrible feeling and I know will eventually end in diarrhoea for a few days. It makes me so tired. I have no appetite. I just keep my fluids up and try to keep calm to reduce stress levels. I just live on soup and chamomile tea until calms down. I'm having a hysterectomy in 5 weeks after a 2.5 year wait on the nhs. I first went to my gp about problems when I was 24 and got diagnosed when I was 38. I had lap surgery in 2022 where they found my bowel, womb and ovaries have basically joined together through endo tissue growth. Part of my hysterectomy is an additonal 4 hours of surgery to peel my womb and bowels off one another before they can take anything else out. I have the general surgeon bowel specialist in the surgery to do this beside my gyno. I completely understand how you feel and hope you get a date through soon ❤️
See what I replied to Cococupid (above) - am in more shock hearing your story too. Again, you are young too. I am beginning to think that this is more common than we realise!
The last time I was in hospital (January 2022) for a Hysteroscope (to look inside) under General Anaesthetic because they thought I had a polyp. The lady in the next bed was in her early 40s and was getting a Hysterectomy. She said that she was desperate and how nothing else had worked, etc. She was in theatre for hours and hours. When she came round after the operation, she was okay, but she said that "everything had stuck together". I didn't fully appreciate what that meant at the time. I remember thinking "I hope that's not me in a few years!" . . .well, here we are!
I hope things work out for you with your surgery. It all sounds scary but we have to trust that we are doing the right thing. It feels like there isn't really any alternative. This condition takes over your life!
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