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Endometriosis UK
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Frozen pelvis

Can anyone please share their symptoms and other issues related to a frozen pelvis please?

I've recently been told I've got problems with my lower spine and vaginismus all linked and worsened by the frozen pelvis

Is there anything I can do to help this?

Thankx

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I too suffer from vaginismus but havent heard of the frozen pelvis. Have u had any treatment or that for vaginismus? Im at my wits end worrying i'll never have kids because of it. xx

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Frozen pelvis generally means adhesions, which are gluey scar tissues that build up and grow from places which have suffered trauma either due to disease (e.g endo) or surgeries or just injuries. Anyone and everyone can get adhesions.

Us ladies with endo causing pain, all have adhesions. The bane of our lives.

They start off small and just don't stop growing till they hit other nearby organs and glue to them then spread out to other places. Eventually the organs that sit inside your pelvis are all glued together with these fibres of adhesions and unable to move much at all. Bladder stuck to ovaries which are stuck to uterus or bowel, which could be glued to the vagina, then the appendix and intestines can get glued to each other or to the peritoneum and so on.

They should not be glued together like that at all.Because the organs are now stuck with strings of gluey stuff they cannot move as they should and re frozen in place, sometimes the worng place!!

Inside you become a sticky gloop of stringy adhesions that stop your organs working properly and can distort them, constrict and squish them, cover them up completely, and cause significant pains when the organs are moved when you move or when you body tries to work normally e.g. passing a poo. (apologes for TMI.)

One significant change I noticed on the outside of me, was that over a period of few months my belly button moved over to the right by about 2-3 inches. it used to be in the middle of my tummy when i looked in the mirror. After surgery it is now back where it ought to be, but inside much more damage can be done.

There is only one way to temporarily fix this, and that is to have surgery to cut away the adhesions and free up the organs that need freeing up. Unfortunately this procedure causes more trauma which of course causes even more adhesions in the future, so it's a temporary solution, but it can mean that you can poo again properly if the adhesions were tightly round parts or your bowel or intestines. It can also stop eggs from the ovaries getting anywhere near the fallopian tubes or down them. It can stop your bladder working properly too.

There are barriers which can be put in place to try and isolate organs that have been freed up in surgery, so new adhesions do not get the chance to grow and stick to neighbouring organs, but it doesn't actually stop the adhesions themsleves from growing again.

The adhesions, while they are gluey substances that stick things together, are quite complicated in themselves and often develop their own network of blood supply. they are aliens in the body that won't be killed off.

They cause a lot of the pains and problems that we associate with having endo.

it is a real physical problem, not a psychological one.

Vaginismus is not normally considered the same thing for us ladies with adhesions restricting or constricting the cervix or outside walls of the vagina.

Vaginismus is a term more commonly associated with either a psychological fear of pain when having sex to varying degrees, or can be caused by pain due to damage or the vulva or inside the vagina, small tears or fragile vaginal lining when having sex.

You might have Vaginismus too in addition to adhesions,

BUT not necessarily, as it is pretty common for ladies with endo to be ready, willing and wanting to have sex, even able to have sex, only to find out afterwards that the sex act has tugged at and torn some adhesions inside you which are constricting the cervix or glueing the outer edges of the vagina or uterus to neighboring organs

...and boy does that hurt for a several days afterwards, not just inside the vagina but the pain is more widespread than local. I can have sex without pain, but if I have a smear test which involves opening up a speculum inside me Whoooooaaaah I'll scream the hospital walls down

as it is literally ripping me up inside at my cervix. Even after surgery on a lot of my adhesions I still found having a smear excrutiating but sex is still okay, so too are internal ultrasound exams okay. We all have different experiences with adhesions depending on where they are located and what they are glued to.

If you do have physical pain during or after sex or examinations down below, which is not from inside the vagina but feels more like it is deep inside you then much more likely adhesions are the problem, and nothing psychological at all, but a very real physical trauma that causes the pain.

The following website might explain it better than me:

clearpassage.com/the-role-o...

it's an american website page, but it does explain how pain down below can be much more than just an involuntary tightening of vaginal muscles which is really what 'vaginismus' is.

Adhesion pain or what that website calls 'deep penetration pain' is not really the same thing in my view.

Adhesion pain might eventually lead on to a psychological fear of having sex because you know it will hurt, but it doesn't start off that way.

Armed with that information it might help you to understand why it hurts, and whether you still feel it is Vaginismus tht you have or the 'Deep penetrative pain of adhesions'. With a frozen pelvis it is much more likely to be the latter.

Having your organs frozen out fo place can prevent them from working, it can cause immense pains not just during a period but at any time, even when coughing or sneezing or laughing or farting. It can cause pain trying go to the loo, it can cause pain inserting a tampon or having sex or an examination, it can be the cause of some very serious medical conditions to the bowel and bladder, or restrict the movement of the lower body and the legs in endo patients.

Adhesions can grown anywhere on the human body male or female at any age, it is scar tissue and sometimes it grows just enough to offer padding and protection from future trauma and stops growing, other times it just doesn't stop.

Becaue surgery does cause more adhesions, it should only be used occasionally to free up stuck organs so they can work better again. Surgery and barriers are the only solutions.

Some women hve found stretching exercises like pilates and yoga can alleviate the adhesion pains by stretching them, but that depends of where they are and what they re stuck to. Such stretching exercises can make the situation worse in some folks.

Hope that helps you understand it a bit better. Almost all of us on this forum will have adhesions to a lesser or greater extent.

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Hello thank you soo much for taking ur time to send all that while ur no well. Hope ur feeling a bit better. My ovaries were pulled in and stuck to my bowel so yes i have frozen pelvis lol. This vaginismus is murder :( I hate it and always feel im so alone with it, I am terrified of my future as im single and want children so badly and after having severe endo i am even more terrified. I have suffered from this for yrs and its so embarrassing that no one apart from my doctor and counsellor know about it. I was given dilators to help but it just feels weird but i know i need to be trying this to help me more, i just wish i could get so drunk and get laid and get it over with but i cant even do that :( thanks for all the info tho. xxx

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Hi

I didn't actually realise it was an actual medical condition vaginismus until my gynae out here in Middle East did my smear and told me various things. I've been seeing a physio (sounds so wired to say) but its really helping me, not sure if this is available in the uk?

My dilators have just arrived, not too sure how I feel about trying then though

Take care xx

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Hi Impatient

just wanted to say THANK YOU for the many interesting and considered answers you write. Always found your comments and replies so helpful. Many thanks ;-)

Just read this link on frozen pelvis - two years after you posted it. Very helpful.

Take care xx

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Thank you so much for this post. I have just been told that I too have a frozen pelvis as a result of numerous surgeries on the uterus due to endometriosis and other gyni complications. The consultant thinks this has also caused issues with my bowl and bladder and has told me that my best option for a better future is to have a hysterectomy. I have been incredibly blessed to have my own child so that is not a worry for me, but at only 34, it seems like a very drastic measure. i just wondered if this is a normal procedure for this diagnosis?

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sorry for all the typos. long day, raging flu, and i'm knackered.

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Thanks so much for your replies and all the info x

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I too have what they call frozen pelvis. No surgeon will go near me now, for fear of me ending up with a colostomy bag. I had problems with my periods, but luckily had to children. 1st was an emergency section. 2nd another section, taken out of my hands due to problems (9lb 10oz baby unable to exit!!). Then I started really really bad periods, worse than they were before, and they were heavy then, always a full week, but now lasting longer.

18 months after my youngest I got rushed into hospital as my appendix went. I then returned to hospital to see a gynae as my periods were still bad, but was informed after weekly blood tests etc. that I had menorrhagia and mild neutropenia!! I so wish I had gone for a second opinion then!! My white & red blood cells were all over the place throughout the month - and there was a monthly pattern. I also told them my mum had bad endo and had to have a full hysterectomy.

I had an op for an umbilical hernia (I have doubts), which they left stitches in!!

I then discovered a lump above my c-section scar, to be told it was another hernia!. They operated - and at last a surgeon told me I had ectopic endo!!

He referred me to a gynae, I requested a full hysterectomy aged 38, knowing the suffering my mum had gone through. After 3 hours surgery they took one ovary with a 12cm cyst, and could not locate the left. A bowel & bladder specialist came into theatre whilst I was under and advised the surgeon to go no further as it was too risky - frozen pelvis! :( I was literally gutted! Went for a second opinion - but they saw my records and said no can do!

After 6 months of Prostap, I have been put on Norethisterone 3 times a day. They stop the periods - but I am nearly 40, how long can I take this for?

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Sorry that was long winded. Hope you get sorted & find some resolve x

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Rainey..have you tried the Mirena coil instead to stop your periods?

It has been liberating for me, and i had it put in under general anaesthetic. I was 43 when it went in. Life changed dramatically for the better once it got going and I didn't have any more periods. Which had got to the stage of 12-15 day out of control floods with agonising pains. I was popping enough paracetamol to knock out a whale. After extensive surgery and wretched zoladex, the mirena stopping my monthly hell was absolutely bloodyless marvellous.

I know the endo is still there in my bladder (pink pee) and bowel and on everything and everything that was stuck to each other, and then freed up in surgery, is probably again stuck again, but just being rid of the menorrhagia made such a difference and no negative side effects of the mirena to report. I do know it doesn't suit everyone, but I highly recommend giving it go. Because if it does work then wow 5 years of relief till it needs replacing and you can forget it's even in there. No tablets to remember to take, or worry about if you forget.

I've done the norethisterone thing in the past too. Not ideal having to take them for ever more, very annoying infact and you have my sympathy.

Doc said they wouldn't consider hysterectomy till I was 50 anyway though i have lost an ovary and fallopian tube to the endo, so I am thrilled to fnd a solution in the meantime for us older ladies. Just wish it had been around 2 decades go.

Definitely try and get it put in under anaesthetic at the hospital, I had a laparotomy op, same as c-section across the bikini line, and it has become a lumpy thing with scar tissue and adhesions holding it tightly back against the bladder leaving everything above it rather saggy, but hey who cares, so long as so much work was done in the right direction it's a cosmetic inconvenience.

hope you get something to sort out your periods other than years and years of popping little pills.

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