Pelvi pain prolapse or hernia? - Ehlers-Danlos Sup...

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Pelvi pain prolapse or hernia?

Lulububs profile image

Hey guys

So about 7 months ago i got up one morning and had severe pain in my side left side and it felt like i had ripped something , it got so bad i fainted and ended up in hosp.

They tested me for every illness goin but i kept saying it felt like a internal injury not a illness ie gallbladder blah blah

I have had every test goin. Colonoscopy, ultrasound internal and external, laparascopy. Ct scans.

Nothing ever found illness wise.

So i took myself to a pelvic floor physio who on examination said i was ultra tight.....but then 5 weeks down line she was shocked that she went inside and there was something there she mentioned some kind of prolapse but nothing she had ever felt before? Now im worried... i been to dr today but they couldnt do a internal

As i had just come on my period and i was to heavy. So i got to go back next week. What i want to know it what can not b there sometimes but then appear?

11 Replies

You could do a hell of a lot of guessing and worrying and still miss entirely what it actually is!

A hernia or something gastric is the most likely for EDSers based just on our common symptoms.

Having said that I used to always get a sharp pain in the appropriate side when ovulating round about mid cycle - and could tell exactly when and which side from - but then I also used to have PCOS or cysts on the ovaries, which probably made everything a bit weirder than it should have been.

Pelvic and abdominal pain is common during second half of the month in eds. I used to get it all the time in my fertile years. Loads of investigations, a gynaecologist thought he could feel something too but nothing shown up on laporoscopy apart from dilated bowel. I have had lots of gastric issues, gallbladder colic, food sitting in stomach for hours, constipation, diarrhoea. Now I am diagnosed I understand it to be caused by the release of progesterone during ovulation and in second half of the month which causes our already lax connective tissue to become moreso. The gut needs a good tone for peristalsis, all the abdominal and pelvic organs are supported by ligaments to keep them from dropping into your pelvis!! Try not to worry. Track your pain on a calendar and see if it is affected by your menstrual cycle. Is it better before ovulation? That might give a clue.

Lulububs profile image
Lulububs in reply to Steenygirl1

It weird u say this i was due on my period when had physio exam and she said she could feel something she couldnt week before! And i am

On my period now and it all feels worse like my vagina is heavy and gona fall out lol!!

I also noticed that it is worse on ovulation?

When it happened it was as if i had pulled a muscle or ligament in the vagina it was crippling!

7 month later i have bad days and good days and yes bad mainly due to period or ovulation....

This is all

So new to me as i have only just been told i am hypermobile( eds)... and i never Put two and two together before to why im always in some kind of pain...

Ive always got a injury

Jay66 profile image
Jay66 in reply to Lulububs

Mine is like that - feels sometimes like I am carrying a rugby ball inside, and hurts like it too. I avoid thinking about why...

According to my dr, HRT would sort that out but she won't put me on it - wants to fit a coil instead. I said no.

Hi Lulububs,

I had an ovarian cyst that burst and that was agony for a short time but then I continued to have acute and chronic lower abdomen pain mostly on the right side. The first gynae I saw missed it as didn't do an internal examination but several months later I saw a second gynae, who on doing the internal examination told me that I have a significantly prolapsed womb.

I was seeing a physiotherapist about this however the exercises she told me to do made my pain so much worse. (I have other complications due to a history of blood clots and so I probably also have varicose veins in my abdomen too which is why the exercises are so painful.)

Prolapsed womb is common with EDS and cysts are common in women in general, lucky us! Try not to worry as I'm sure once you have had your internal examination you will know more.

Tracking your pain in a daily dairy like Steenygirl1 suggests is a great idea, I did this and I also numbered the daysaccording to my menstrual cycle. I wrote down everything I ate and every bowel movement too (to see if the pain was linked to my digestion). I also wrote down everything I did and every symptom I was experiencing and then colour coded it all with highlighter pens, i.e. green for pain or any symptoms, yellow for food, pink for any medication I took like laxatives etc. It might sound a bit OCD but colour coding everything made it so much easier to look back and see any connection between my symptoms and what I did, or what I ate etc.

Sorry you're in so much pain and don't yet know why, I was left like that for over two years by my local hospitals, it took a referral to St Thomas' in London to finally get sorted out. Let us know how you get on after your examination and dont let the doctors brush you off with comments like "its just something women have to go thru"! Claire

Lulububs profile image
Lulububs in reply to leakeadea

My dr have been good so far but now they are getting to point where there flummoxed as to what this pain is... although noone but my physio has thought to give me a internal?

Ive had a laparoscopy and colonoscopy which have came back clear as they thought i had diverticulits or endo. But all way along i was telling them it feels injury related ( muscle related) like something has just gone

I just wander why physio has not felt anything in last 5 pelvic floor sessions but then something was there? Especially when just due on?

leakeadea profile image
leakeadea in reply to Lulububs

With a prolapsed womb sometimes it's more dropped down than other times, so she it might not have been able to feel it on one occasion but then felt it on another.

With ovarian cysts, apparently we can often have them but they just get absorbed back into the womb, so there one week but gone the next. If a cyst bursts however it can be excruciating.

I'm certain that I have adhesions from when my appendix was removed but the gynaecologist refused to give me a laparoscopy because of my delicate eds tissues and clotting issues, so I guess I'll never know. I can get the tearing feeling like you describe, it actually feels like something rips inside, which I have put down to adhesions tearing.

You say that it can be felt when you're just due on, wouldn't the womb be at it's heaviest then so be more likely to drop down? Apparently the womb will drop down the longer we are standing up, or when we lift anything heavy etc. Mine definitely shifts according to how long I've been upright and my abdominal pain is always worse when it's dropped down, plus I get really bad lower back ache when it's dropped too, it's because it's pulling on the ligaments inside

Have you had a Ct scan of your abdomen?

Lulububs profile image
Lulububs in reply to leakeadea

Awww had not thought about that! When i go back tues were see if dr feels anything and physio on friday, if it not there again then mayb it was.. although saying that my husband been saying for months it doesnt feel right( tmi) he cannot get inside without it feeling like he hitting something... it so uncomfortable we not had sex for 6 months..

i think it womb related.

At mo i got a cold and it is killing me to cough and sneeze. Plus on period so feel like im kinda full inside.

I have has a laparascopy my ovaries were fine nothing at all( they were looking for fibroids / endo mainly) .

Had a colonoscopy, nothing.

Had ct scan not on abdomen though it was on kidneys.

The first internal was with physio 5 weeks ago but she only went into massage the p.f at opening ( about inch) but when i mentioned that my husband cant get in all way she went up further and was like “ oh yeh” !! So whatever it is , is further up, not at opening.

I can relate to the standing thing, the longer i stand i get back( almost bum) ache. I also get a pulling right in front on pelvis bone... just to the left a bit

I have been trying to do my “ homework” over today to see what im dealing with and how do you stand on all the supplements?

Ie magnesium, coq10, glucosamine, collagen.... so u can strengthen the connective tissue?

Not 'tmi at all, I used to experience painful sex with my ex and now I know why!

Everything you're saying definitely sounds like things are pointing towards some kind of prolapse.

If you do discover that you have a prolapsed womb then there are numerous options. They usually start with physio but if this doesn't work then they can put stitches in to help hold the womb in place and then there's a hysterectomy 😯. The second gynae who diagnosed mine said that stitches may not work for me due to my EDS and I believe that having a hysterectomy can then lead to other stuff above dropping down, yikes! There are things you can wear inside or have put in like a pelvic ring but the physio should be able to tell you more about that if you do discover you have a prolapse.

I plan to look into what to do re my prolapsed womb once I've had an operation to sort out the blood flow and clotting issues in my abdomen and legs, the op is in less than two weeks time, so I might finally be able to concentrate on sorting out my womb by new year😀!

Regarding taking supplements, I was told I should take them last year by an EDS neuro-gastroenterologist but I've been so preoccupied dealing with my blood clotting issues that I haven't yet started taking any. Again I hope to be able to concentrate on looking after myself better EDS wise come New Year😕!

I would definitely recommend taking them however as they're supposed to be very beneficial😀.

Lulububs profile image
Lulububs in reply to leakeadea

Thanku so much for ur kind advice..

You sound like u know ur stuff when it comes to this.. i basically had day off today and been cramming up on knowledge, ive ordered all me supplements, i have been taking glucosamine for about a

Month already and noticed difference already.... i now have msm

And coq10 coming to... so lets hope..

I really hope that your clotting and ops are successful and u can move on to taking care of yourself.

I had my lap and they noticed i clot to easy so i have been put on transexamic acid as my clots were horrific when was on period and it has worked for me in that respect.

It a mind field isnt it...

Yes it's definitely a minefield!

I had to Google what "lap" is and what transexamic acid is for. 😶

I too get clots during menstruation but the clots I'm talking about are DVTs, Pulmonary Embolisms and clots to the brain causing TIAs, mini strokes. h

I have a chronic thrombo-embolic disease as well as EDS but have been struggling to get a proper diagnosis of Hughs Syndrome/APS. I take apixaban an anticoaglant medication daily however I dont believe it is keeping me clot free, as it isn't usually prescribed for patients with my type of clotting history.

There was a recent link on the APS healthunlocked pages, to a surgeon in the USA who has noticed that blood abnormalities like clotting and bleeding are found in his EDS patients. Perhaps its only a matter of time before we see this confirmed following further trials and investigations?

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