hi everyone. Great to have a space to share story and get advice. Endo can feel like a very lonely condition at times!
Has anyone ever had an endometrioma attached to an organ? How did it affect you?
Been having excruciating and random pain episodes for up to an hour for over a year.
Have been diagnosed today with severe endo and endometrioma and awaiting surgery.
So sorry to hear you are in such pain but also relieved that you be getting the care and treatment that you need!! Sorry I do not have confirmed endometrioma so cannot give advice. I hope you won't mind me asking what your symptoms are like? I have been having issues with awful pain on my left side for few months I have confirmed endometriosis but never knowingly had cysts. Would really appreciated any thing you feel comfortable to talking about.
Thank you I hope others will be able to help more than me and best of luck for the rest of your journey
x
Hello.
Sorry to hear you’re struggling too. I have always had pain now and again after bowel movements but this is magnified x 100. I get pain before my periods - sometimes 2 days before, as if I’m about to start but then nothing.
My pain has no obvious trigger and doesn’t happen at the same points of my cycle. It’s like a spasm twisting pain and no position relieves it. I take ibuprofen which seems to calm it down as does heat and I then have a really bloated stomach for a day or two after with a dull ache.
I had an MRI which showed the cyst attached to my bowel. Is an MRI an option for you?
Thank you for the information. I understand its really personal so I really appreciate it. I am having an ultrasound but no sign of a date yet. Thank you!
Hey,
I had surgery last June for bilateral endometriomas. Both were fused to my uterus and the right side to my bowel. Unfortunately my right side has returned but we are TTC so I am not on any medications. I did have 3 months of decapeptyl after my surgery and it was the best I felt in years.
I struggle with chronic pelvic pain, worse during ovulation and about a week run up to my period plus a bunch of other fun symptoms!
Hope you aren’t waiting too long for your surgery!
Thank you for sharing. Yes can relate to ovulation pain. Almost as bad as period pain at times. Sorry to hear you’re back in almost the same position. Hope you get some good news re TTC soon. It took nearly 2 years to conceive my son - I’d just had a diagnostic laparoscopy and fell pregnant a few weeks/months (memory hazy he’s now 10!) after so thankfully didn’t need to go through fertility treatment. At the time the consultant didn’t seem too concerned with the amount of endo but it must have made a difference.
My bowel is attached to cervix and left ovary where I have an endometrioma. They tried to do hysterectomy which is how they found it fused. They stopped immediately as my gynaecologist was not an endometriosis specialist and admitted to not " having skill set". Since then I was referred to an endometriosis specialist team at another hospital. I was not prepared to wait so went private in November and had an MRI which confirmed the endometriosis. I'm currently on zoladex which I started in January. It has just started to work. I think it depends on your age as to what they decide to do. My endometriosis specialist doesn't want to operate due to the danger to my bowel which is significant. As I'm approaching menopause the idea is that the zoladex will help to calm everything and then menopause will help too.
Yes I’m a bit nervous about the fact my bowel is involved. I’ve been offered prostap to minimise the growth of the endo until surgery but I’m not keen on having a medical menopause. Will have a look at zoladex I’ve never heard of it. Good to know it helped. Would you mind me asking how old you are?
Would be good to hear if anyone else has taken it prostap. I guess we don’t want to wish time away but my mum said the menopause was the best thing that happened to her. Looking back she probably also had endo but it wasn’t as well recognised in the 80s and 90s.
Zoladex and prostrap are the same. Lots of women go on it prior to surgery to calm things. You need addback HRT as well or you do get awful side effects but as I can't have surgery it's working for me as my main problem was hemorrhaging constantly which then resulted in anaemia. Zoladex doesn't work immediately but I'm in my 3rd month now and I've finally stopped hemorrhaging and I'm back at the gym. I'm 51 years old. They will do an MRI and with a good team you should be able to have successful surgery. If I was in pain then I'd push more for surgery but I've no pain whatsoever anymore. I eat an endo diet and this seems to have helped me considerably. Good luck x
Hello
I was diagnosed through MRI last year with a 6.5cm endomtrioma and I can honestly say it’s been the worst cause of all my symptoms, even having stage 4 endo. Like you, there is no obvious trigger or time of the month that it starts. It used to come and go but now it just seems to stay permanently. Aside from the obvious side pain, I struggle with constant pain in my buttocks which spreads down my leg and causes me to limp. As you said bowel movements are extremely painful and I find my self rocking just to get through the motion! I can honestly say I feel your pain! I’ve been on the waiting list for 8 months now and eagerly await having it removed to try and get back to some kind of normality. I hope you get your surgery date soon and that you find a way to navigate through the often unbearable pain! Take care.
Thank you for sharing. While I hate the fact you’re all going through this it’s so comforting to know I’m not alone.
Don’t know about you but I feel a lot more bloated than usual - don’t think the age related weight gain helps with that. Feel like I’ve gone up a dress size in 6 months!
The pain is like nothing I’ve ever experienced before. It’s like my abdomen is being ripped apart. Very scary and takes a toll on my mental health. Think the next step is to get some support for my head!
Trying to get some relief from Pilates and stretching which sometimes feels fruitless. Any tips greatly appreciated!
I had / have stage 4 endometriosis of the bowel and bladder (as well as pelvic ligaments, cervix, etc) - I had surgery 2 years ago which has made a significant difference to my pain. I had decapeptyl injection prior to the surgery. I used to get flares that were excruciating and required trips to hospital for pain relief.
So good to hear you got relief from surgery. I’m anticipating a fair wait - the consultant offered me prostap in the mean time. I’ve been so close to going to an and e but I’m usually in so much pain i can’t contemplate moving and then wiped out for a few days after.
My bowel, womb and ovaries are stuck together. I have one 20cm and one 14cm endometrioma cyst on each ovary. I'm having 6-8 hours of surgery next week to unpeel everything, remove cysts, fibroids, tissue growth and a total hysterectomy. It is very painful all the time. My lower back is bad but my gyno says that is because my pelvis is covered in scarring and adhesions. My ovaries shoot with pain to the point i cant sleep. And passing stools makes my bum feel on fire from bottom to vagina. It's a lot to take in when you are first diagnosed with all this info. I hope your surgery goes well and we both got some relief from this rubbish condition 💕
How did your surgery go? I’ve not logged on for a few days so only just seen your reply.
Yes can relate I have a constantly sore lower back. I’d always wondered whether the two were related.
Wishing you a quickly recovery ❤️🩹
hi Northernlass, sorry you’ve had so much pain but I’m glad things are in motion for treatment etc.
I’ve had similar - trans vaginal ultrasound and MRI showed endometriomas on my left ovary and that the ovary was adhered to my rectum. Had surgery a few weeks ago and they ended up removing the left ovary and tube with 4 endometriomas, one of which was 8.5cm.
Like you my pain was random!! I had bad period pains and symptoms of course, but I had a lot of non-cyclical pain. Random sharp pains on left side that would come and go for about 5-10 minutes and take my breath away. I also couldn’t lie or sleep comfortably on my left side. And had a near constant discomfort in my abdomen/side - described it as feeling like a ‘belly full of rocks’. I was also peeing a lot and especially at night - that got really really annoying and I was getting really anxious that I might have diabetes, but after my surgery the night time peeing seems to have subsided so I’m fairly sure the big cluster of endometriomas were squishing my bladder. Oh and I found I was unable to do some yoga poses / certain stretches or bending movements cos they felt uncomfortable.
I hope it all goes well for you and you find some relief x
Thanks for sharing. I hope you get relief from the surgery. It’s been such a help to hear everyone’s stories and to know that there’s light at the end of the tunnel for people.
Funnily enough I’ve noticed in the run up to ovulation peeing seems to be a bit odd at times so I’m wondering whether there’s so much inflammation in there it’s affecting my bladder too.
Just started with another random pain episode after a bowel movement - hot water bottle at the ready! Really hope surgery brings some relief. Bowel movements have always seemed to be a bit of a trigger but mostly mild pain to follow. However I once had a medic out at work when was in my late twenties as I nearly passed out with pain after a trip to the loo!
Does anyone suffer with bad joint and muscle stiffness at certain times of their cycle? I sometimes drive myself crazy wondering which symptoms are linked to endo.
Thanks again to you all for being so open. It’s such a help.
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