Hey, just wondered if anyone else had been told they have a frozen pelvis due to severe endo? I have my bowel stuck to ovaries, tubes etc and my womb is being pulled forward. Basically one big mass with deep infiltrating endo. They could only see one ovary on my last laparoscopy as the other is burried within somewhere. They have actually asked for a oncologist opinion as it's so bad and destroyed my appendix along the way. I'm so upset and fed up as I've had the decapeptyl injection but had constant bleeding since. They want to try do another op in a couple months time to try and see what they can 'un stick' but as my bowel is so affected they aren't sure what they can do and will be a massive surgery.
Anyone else had it this bad and any tips ??
Thanks X
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Endofaye
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Hya , oh no that sounds horrific 😩I’m sorry I don’t have an answer to your question , as Iv not been diagnosed yet , I’m in the middle having my symptoms investigated . I was just wondering if you don’t mind me asking what your symptoms are like with how severe you have it ? Also did any of that show up with an ultra sound ? What was your diagnosis Time scale ? I hope you are feeling ok x
My symptoms started when I first got my period so around 13 years old (I'm 33 now) just really painful stomach, diarrhea, pain down my legs, unable to move due to how bad the pain was . Also like a pulling feeling in my stomach and a burning feeling . I was always told it's just bad luck that I got 'bad periods' when it's not normal.. which I know now.
The only reason I had my first laparoscopy in July this year was because they finally decided to give me an ultrasound and found a cyst on my ovary. That was September 2020, they said just wait and see if it goes.. then 4 months later they scanned again and said it has grown so then I had an internal scan and they said it was an endometrioma so decided to removed it. That was in January this year and my surgery was in July, so was around 6/7 months wait for surgery.
The only way they can diagnose Endo is via surgery, they will only see cysts on an ultrasound. But if you have symptoms then they will so the surgery just to check.
Aww it’s awfull being in pain like this and not having a diagnosis for years . I’m having all these symptoms and pain too . The last 6 months it’s just non stop where as over the years I’d have weeks/days on and off feeling like this . Iv had a ultra sound as my bloating was so bad the doctor sent me as an emergency along with elevated ca125 levels . But nothing showed up 😩so I’m waiting now but on the routine list not down as urgent because clear scan . But Doctor did say that’s what il probably have next a laparoscopy. Glad you have a diagnosis at last . Hope you aren’t into much pain now ? Do you feel better after the surgery? Thank you for your reply x
Hi, I was diagnosed with a frozen pelvis after first lap in Feb 2020. The consultant also couldn’t see my left ovary due to large amount of endo and my bowl sticking to pouch of Douglass and lots of adhesions. Found a new consultant this year and we agreed they would go in again and remove the left ovary with cysts plus tubes that was hidden and try to remove as much of the adhesions as poss. He also drained a large cyst on right ovary. I had this op yesterday so recovering now. I most likely will need to have more surgery if I’m still in pain to detach the bowel from further endo, it’s going to be down to me to decide. But for now I’m grateful I’ve had the surgery as I’ve been in pain for the past 5 years and it’s been a journey to get here. My advise, find the right consultant, who works at a endometriosis center who you can discuss your options. There are a few centres round the country, I was lucky there is one at my local hospital in Dorset. Talk to them about your results and what the options are. It’s such a shame we all have to have years of pain and investigations before anything is done. I’m hopeful this should take away 90% of my pain, though I can feel some pain down my leg still. Good luck and hopefully you can find more answers in the future via the doctors and this forum xx wish you the best xx
Hey, thank you so much for the reply. It's really helpful hearing those things. Yours sounds very similar to mine where they can't see my other ovary (they can't even tell if it's the left or right!) As everything is just one big mass. I had a 7cm endometrioma drained in my last surgery but they said it was so bad they couldn't do anything else until they had spoke with me.
I have an MRI booked to see exactly how bad it is inside my bowel. I do feel so fed up and anxious about it all.
So glad this forum is here to speak to women that are going through the same.
How are you feeling now? How was your op and recovery?
I live in Cornwall and my local hospital is a BSGE centre which I'm grateful for. Xx
Hi Endofaye, I've recently been told I have frozen pelvis and like you I am 33 and have been suffering with pain from pretty much my first period.
I have all the symptoms you describe and completely empathise with how exhausting and frustrating it is to constantly deal with pain.
I've been told that frozen pelvis is not so common and I have found it difficult to find anyone with this type of endo so have been doing A LOT of research. For the pain I have been trying to eat an anti-inflammatory diet including eating gluten free products. In terms of improving frozen pelvis I believe the main route is surgical which it sounds like you have done already. As endo is fuelled by hormonal imbalances (mainly high estrogen) I have tried to avoid unnecessary toxins that increase estrogen including swapping to natural unbleached sanitary products.
I still feel pain and I'm sure my insides haven't made any significant changes (as of yet anyway) but I definitely have significantly less pain and bloating. These tips may or may not work for you but just wanted to add that you're not alone and I hope you find something that does help you. X
Yeah I've found it difficult to find anyone else that has a frozen pelvis from Endo too. It really is worrying me, especially as they are concerned it could actually be something more sinister going on as they cannot see one of my ovaries.
Have you had surgery at all? I've got some booked in for November but I dont think they are going to be able to do much.
I might try the change of diet etc to see if that helps any symptoms as I'm really at a loss and don't know what else to do. I was in shock when they told me how bad it was as I kind of just got on with being in pain and thought it was normal.
It can be scary. I've gone through a mix of emotions and you're never really prepared to hear how extensive it has become.
I also have an ovary hiding somewhere but from what I've seen on here a few women seem to have ovaries that end up located behind other things, especially when the endo is severe due to the amount of adhesions we have. I mention this to try and alleviate your fears a little. It's your body so you will rightly be concerned either way but just want you to know the hidden ovaries situation appears to be a little more common so fingers crossed there's nothing sinister going on.
I had a laparoscopy about a year ago just to drain my endometrioma's and for the Doc to have a look at how bad everything was (at that point I didn't want to go through with the full on op) so I'm aware from that laparoscopy that I've got quite a mess inside. I've now decided to give the op a go so I'm on a waiting list for this.
But honestly, change of diet has done wonders for me. I hope it does the same for you x
Thank you, it's nice to hear about other women's experiences for sure. It does help. My emotions are up and down at the Min. I try just get on with things but then I get times when I think about it too much and worry myself sick. I'm on that injection to try calm things down (put me into menopause) but tbh things have been worse so far! Constant bleeding and pains that I don't even know what they relate to anymore.
What made you change your mind about having the op? My surgeon didn't really give me an option, he said it will only get worse etc if I don't. So didn't really have much choice. I am terrified tho as it will be major surgery that can take 6 hours plus. I am going to give the diet a go I think. It can't do any harm anyway. Did you just Google what things to avoid/eat? Or is there a particular plan you follow? Xx
Oh no! Sorry to hear the injection hasn't brought you much relief. Hopefully as it syncs in with your body it gets better.
I only didn't have the op before due to concerns about the negative impact on fertility. I wanted to put something in place before going ahead with the op. My Doctor advised that if fertility was a priority then the op wouldn't have been beneficial at the time although he was happy to operate.
Re: the diet, yeah I googled anti inflammatory foods but I remember seeing a couple of good videos on YouTube who suggest meals/recipes. Just can't remember their names but I'm sure will come up with a quick search.
Good luck with your op and feel free to DM me if you wanna chat. X
I was told after a scan at the beginning of 2020 that I have frozen pelvis, adenomyosis, my womb and bowel are stuck together and my left ovary is twisted and stuck to the back if my womb. Since everything was confirmed right at the beginning of covid 19 pandemic I've had very little input from Endo consultants other than being told waiting lists are very long.
I'm on the progesterone only pill daily. I also take Serrapeptase tablets which help destroy adhesions and cysts. I buy these from Holland and Barratt - was told about these from a lovely woman on here who has also not yet had surgery for endometriosis.
I get very painful nerve pain down from my left pelvis to my knee, effecting the strength in my leg at times. I can also no longer move my left leg too far apart from my right. Also have horrendous daily pain, bloating, diaphragm pain occasionally and constant internal pain. Although! The pain is much more managable since starting Serrapeptase.
My GP is happy enough to let me get on as long as I can manage my symptoms myself. I'm lucky enough to work for a manager who lets me work from home whenever I need to due to my Endo symptoms.
Its so worth looking at if Serrapeptase can help you too. Good luck x
Hi. Hope you are doing ok. A frozen pelvis is fairly rare and can range in how much. I found I had a full frozen pelvis in 2017 after having normal ct and mri scans, my surgery was for a tricky located chocolate cyst that had caused a lot of problems the yr before so the frozen pelvis diagnosis was completely out of the blue. I was blessed with the most lovely surgeon who on finding a full frozen pelvis that was one of the worst he’d seen to date, he decided he couldn’t do nothing and bring me back so he spent 8 hours trying to free up as much as possible. He couldn’t tackle everything but I could feel the difference very quickly, the constant heavy full feeling went and the pain dramatically reduced. I was on prostap for 6 months after as despite the very low chances we wanted to try ivf so it reduced the chance of it returning before that. I’ve been fairly pain free since the surgery, needing nothing stronger than the odd paracetamol which compared to me needing 29 pills a day and regular ending up in hospital due to the pain is a game changer. Are you seeing a pain team? They really helped me get on top of the daily pain whilst I waited for surgery.
The other thing is diet, there are certain foods that trigger pain for me and I found the endometriosis diet really helped with working out what those triggers are for me and I can manage the odd flare up - sometimes cake is needed 😀😀!!
Hi, how are you getting on right now if you don't mind me asking?I've been diagnosed with frozen pelvis about a week ago and I'm looking for the answers ever since.
My journey is very similar to yours. The doctor doesn't even suggest operation for adhesion removal because everything stuck together and they can't see my right ovary and tube.
They said it would be too risky because of potential bowel damage.
We wanted to have a baby back in 2021 and had an ectopic pregnancy due to undiagnosed endo. That's where the whole story started.
I just wanted to ask if you had any success with your endo. Have you had a surgery since?
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