Prolapses anyone?

Hello again all πŸ‘‹πŸ‘‹πŸ‘‹.am continuing to prep for my gyn/urology physio appt this week. This appt is on referral by my surgeon urologist this time - continuing investigations into 5 months of flaring severe internal abdominal pain (quite new & different to the chronic lower GI symptoms I've been managing very successfully all my life)

today I reviewed my files from previous gyn/urology physio sessions in 2009 & there I found i'd been given an excellent NHS pelvic floor advice leaflet that includes diagrams & info on several types of abdominal/gyn/uro prolapse....which has now got me thinking: could some sort of "visceral" condition/prolapse be the sorce of these severe pain flares?

So, I got out my official bible: Hypermobility, Fibromyalgia and Chronic Pain by Hakim, Keer & Grahame (Churchill Livinstone Elsevier, 2010) and found excellent sections re hypermobility bowel dysfunction, EDH visceral disorders (inc prolapses) etc

I already have had at least 1 prolapse (anal prolapse involving severe early onset piles - requiring NHS full-on haemorrhoidectomy when I was only in my early 30s (not due to constipation or any other normal cause)), so now I'm curious what sort of investigations it would be reasonable to request from the NHS...I recently had a full abdominal/thoracic ultrasound scan which found nothing feeling is that ultrasound scanning isn't the most refined and effective type of imaging available, so what about MRI? Or even laparoscopy?

If anyone here has experience of of internal organ prolapse in the lower abdomen/.pelvis, be they gyn, or urinary tract, or lower GI...I'd be very glad to learn about your symptoms, investigations & treatment

πŸ€ Coco

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  • Me, prolapse bladder and uterus. I've managed with doing pelvic floor exercises but when I get a cough I leak fractionally. To diagnose I had internal scan. So, you're not alone. Oh, I've not had children, so, not the cause. πŸ˜‰

  • Just what I was hoping for: thanks so much mabsieπŸ‘πŸ‘πŸ‘πŸ‘

    By internal scan, do you mean ultrasound wand inside?

    Glad you're managing ok πŸ˜˜πŸ€

  • Yes, to the wand Coco. Hope you get sorted. 'M'πŸ’

  • Thanks again 😘

    One more question (apologies for the graphic description):

    since early October I've been coping with sudden severe pain events down there....In certain positions, and with certain types of pressure on my abdomen (especially from tummy button down) I get excruciating internal pain in my lower pelvis - the pain comes on so severely like a huge wave...I can hardly move it's so bad...the wave of pain turns on dreadful urge to vomit & diarrhoea + I go sweaty with chills at the same time and feel like I'm going to black fact I nearly do (and I'm a toughie...have spent my life coping with massive quantities of chronic pain in various parts of my bod, keeping calm & carrying on). Anyway, soon as I can gather my wits to move (this takes a few minutes from the onset of the worst pain), I sit on the loo with a bucket & it all pours out....I've had to sit there for up to 30 min while the pain etc subside enough so I can lie down for another 30 min. After that I can get up & gingery/gently go about my life again....but for a week+ after these severe pain events my chronic abdo stuff is worse than usual

    These severe pain events remind me a lot of the sensations during the severe pain events I spent many years suffering from before the chronic pain complex due to the prolapsed discs in my lumbar & cervical spine was numbed by Pain Clinic ops. But I know these severe pain events are not spine condition related

    To be precise: these abdo/peritoneum severe pain events do stand alone, but also they do generally stimulate the chronic lifelong constant queasiness & general sensitivity to pressure that have been a day to day thing all my life, all over my abdominal/ thoracic cavity. As a result I've never been able to wear tight clothing or lie on my front. I always have been advised this constant sensitivity is due to a form of IBS + sjogrens. And I do think it probably is due to those conditions, and all my life I've lifestyle managed this via diet etc.

    All this doesn't involve my stomach (I have chronic gastritis, which gives a totally different sort of constant nausea), whereas I think these newer sudden severe pain events are probably due to some kind of internal, visceral prolapse

    Does what I'm describing sound anything like what you've experience? No hard feelings if you don't feel you can comment, but any thoughts will be vvvvv welcome


  • I have problems with my spine and ligaments. Please remember I'm as yet undiagnosed with EDS. I had my appendix removed in my teens, used to be doubled over with that pain. You had that checked out? Trapped nerve in spine made me feel like you in the nausea, passing out bit. From time to time I can get doubled over with low pains but I've got used to it and accept it as part of life now.

    Coco, it sounds to me you need to go to your dr. and let him/her decide what tests you really need. Do you have an EDS consultant?

    Right, time to do things around this house.

    Take care, 'M'πŸ‘

  • Thanks dear mabsie...yes...have been in the course of a step by step diagnosis process since October. I have the ultrasound scan report already. Once I have the physio report (after I see her on Thursday), I'll be in position, guns blazing

    I know a lot about my spine condition, having been in treatment for decades. I am certain this particular abdo stuff isn't my spine...but yes: you are right: the first thing my Drs & I did was check to make sure the spine isn't the source of this abdo stuff

    Am glad you brought up appendix...this has been in the back of my mind: I will ask about this

    Luckily, I'm having my regular hospital clinic appts with several of my consultants soon: rheumatology, then urology, then immunology & then gynaecology...somewhere in there I'll see gastroenterology too, so ALL Of them are going to be pressed for assistance with this. Due to the multisystem nature of my illnesses (systemic lupus, sjogrens, EDH + the usual collection of secondaries) my persistent abdo stuff is considered "complex"...but now that these severe pain events are in the picture, it's time for a concert step diagnostic & treatment efforts from all my consultants

    Can't thank you enough for helping me look at this

    Am wishing you well...and all the very best with your health probs


  • For many years my Mum had a grumbling appendix but wouldn't admit to it. Eventually she had to be admitted and they found an abscess on her appendix. She had a course of antibiotics and then they removed the offending thing. She was a different lady after this.

    I have terrible swallowing issues associated with something going on in my digestive system. Nobody is sure what is going on even after tests - gastroscopy - inconclusive. It's thought it could be muscular spasm due to my health problems. Mystery me!

    I'm beginning to get like a dog with a bone as I want/need answers. Grrrrrrrrrr.πŸΆπŸ˜‰ 'M'

  • oh boy....what a life

    hope your mum is well now...i've heard about these so-called grumbling appendixes...will defintiely ask!

    eeek: me too....starting back in 2003 i've been fully investigated re my chronic early onset upper GI plenty of sound diagnoses as a experience is that it's worth going through ALL the tests (gastroscopy + biopsy, pH manometry/motility etc)'s good to know i just have chronic gastritis + oesophagitis with gastric metaplasia, but only normal levels of reflux...and i don't have barretts oesophagus YET....BUT, once i'd spent 6 years on gastro prescrip meds, in the end, what's helped me most (especially with my swallowing difficulty (which has been a BIG prob all my life)) has been mainly lifestyle management sure you've figured out how to help yourself too....etc are you into fresh ginger tea (i make a big pot daily & sip the stuff 24/7)

    go for it: get those answers πŸ‘πŸ’ƒπŸ€

  • Mum passed away in'94.

    Yup, I've recently learnt to drink cold water before and during a meal. When it's bad I can't even swallow my own saliva and bring up masses of mucus. I daren't go out for meals with friends incase I have a bout of it.

    I've tried pushing for answers but it hasn't worked so far. 'M'

  • MmmmmπŸ€”...Mabsie, have you been tested for sjogrens? Symptoms as bad as yours NEED to be figured out!

    Feeling for you...xoπŸ€

  • My previous dentist thought I had lupus. He was a dr as well as a dentist. Oh well, maybe one day I'll find out. Thanks for the reply. Be good! πŸ˜€

  • Hmmm...this morning I was rereading my reference materials on lupus & GI probs...your dentist was on the right track (in my humble opinion): maybe lupus &/or sjogrens...good luck & take care πŸ˜‰πŸ€

  • Yep, I had an anterior prolapse (bowel into vagina) and posterior (bowel into vagina) but had the anterior one repaired when I had a hysterectomy. That failed 8 months later and the vaginal vault was also coming down at that point, so there were then THREE prolapses. Because of the EDS making me more susceptible to prolapses I'm now deemed not to be a good candidate for further surgery and have gone back to having a prolapse pessary which actually works VERY well for me and I'm very happy with. It's a different type to the one I had before the surgery - I had a prolapse ring pessary then, and now I've got a shelf pessary, but it works well and I'm totally happy with it. I have always had a problem with piles but not had any surgery. I've always had a problem with constipation, and remember as a tiny child my mother giving me liquid paraffin for it, but again, that can be one of the symptoms of EDS! I never had any abdominal pain with my prolapses, but I know that some people do, especially posterior. But I knew I'd got at least one prolapse because it felt like a bulge at the entrance to the vagina.

  • MANY THANKS for your wonderful reply: the voice of experience! πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

    A few questions, hope you don't mind:

    How old are you?

    Have you had children?

    Re what turned out to be these prolapses:

    What type of consultants investigated your symptoms?

    What type of imaging was used during investigations?

    What type of consultants have helped you the most:

    Re investigations?

    Re treatment?

    E.g. Am guessing you saw both gynaecology & gastroenterology?


    PS found good info just now on the Mayo clinic website (much of which fits with my case:

    prolapse may cause no signs or symptoms. Otherwise, you may notice:

    A soft bulge of tissue in your vagina that may or may not protrude through the vaginal opening

    Difficulty having a bowel movement with the need to press your fingers on the bulge in your vagina to help push stool out during a bowel movement ("splinting") (yes I do have this)

    Sensation of rectal pressure or fullness (yes I do have this)

    A feeling that the rectum has not completely emptied after a bowel movement (yes I do have this)

    Sexual concerns, such as feeling embarrassed or sensing looseness in the tone of your vaginal tissue (yes me too)

    Many women with posterior prolapse also experience prolapse of other pelvic organs, such as the bladder, uterus or small intestine. (My anal prolapsing piles fit with this I think)

    When a posterior prolapse is small, you don't need medical care. Posterior prolapse is common, even in women who haven't had children. In fact, you may not even know you have posterior prolapse.

    In moderate or severe cases, however, posterior prolapse can be bothersome or uncomfortable. Make an appointment with your doctor

  • Hi Barnclown:-))) LOL! I'm glad it might have been of help:-)))) I'm now 66. I had my first pessary ring when I was about 55, I'd guess. I've never seen a gastroenterologist, but only various gynie doctors. I had three pregnancies, the first I threatened to miscarry slightly at 3 months and then my waters broke 6 weeks early (typical EDS) and the second pregnancy they told me I was definitely miscarrying, so I went home and didn't move for weeks, and held on to it, and the third pregnancy I did miscarry, so had a D & C after that as an emergency because of bleeding - it hadn't all come away. I also had an op for the uterus lining to be removed in my late thirties because of fibroids causing excessive bleeding. For prolapses only manual investigations were done. My GP who took over fitting the pessary after the local clinic closed, had pushed me to use Vagifem estrogen pessaries at 3 times the recommended dose for 16 months despite my concerns and I then got endometrial cancer, and at that point they did a scan and biopsy of the uterus (they had to do the biopsy under general anaesthetic because my cervix was totally closed, which often happens after any sort of surgery in the uterus) and hence the hysterectomy. But the investigation and treatment by gynecologists all the way along has been excellent. They were good initially when I was first referred with the prolapses, and then when I was referred for the possible cancer investigations, but when the prolapse failed after the repair I chose to go privately to see the gynie then because it saved a wait of about 4 months and I was desperate for another prolapse pessary then - it felt as though a lemon was wedged there all the time, but the gynie who fitted my pessary I've got now arranged for me to be taken over by her at an NHS clinic at the hospital, so I go for the first check where it will be taken out and replaced, this week. Do feel free to ask anything else:-)

  • YOU ARE A 🌟🌟🌟🌟🌟🌟

    You've really been through A LOT 😧

    We're almost the same age: am 62. But am infertile due to DES daughter birth defects (inc endo)

    I will get back to you after I see the gyn/urology physio tomorrow (my urology surgeon referred me to her...I'm expecting internal examination). I'm now ultra prepared for getting the most out of this appt

    Cannot thank you enough

    Take care


    PS Am thinking I'll send you a forum message next...rather than prolong this open discussion

  • I hope your appointment goes well:-)))) What is DES? I googled it but still am none the wiser:-( Yes, it was traumatic at the time but they caught the cancer at an early grade and stage, so while I still go for check ups, there's a good chance it won't recur. The luckiest thing was that I was sent for a scan because I'd had bleeding, but the bleeding was actually caused by the GP not rinsing off the abrasive powder on the prolapse ring which I later found out they were supposed to do! But because my cervix was totally closed the bleeding that was going on inside the uterus was trapped there, so I'd have had no other sign of the cancer going on! So I count myself lucky.

    Do let me know how it goes tomorrow:-) I'm quite happy whatever way you want to communicate:-)

  • are one brave woman

    here is a good link for info re DES...this is my big exposure is what probably tipped me over into immune dysfunction (infant onset systemic lupus + early onset immunodeficiency). DES is known as the "silent thalidomide" for reasons you'll undertstand:

  • Oh my goodness. I'd never even heard of it and it's so awful! I'm so sorry! It's horrendous!

  • you, I consider myself a lucky one. Whatever, the DES experience has certainly added spice to my life

    And discovering DES was the chemical castration drug the uk gov gave Alan Turing in punishment has coloured my view of the whole subject


  • Phew - it's a real shocker. But what shocked me most of all was how quiet it's all been kept!

  • The des scandal hit international headlines of most big news when the cancer & brithdefects research expose came out in the 1970s...around the time of thalidomide...but because our defects aren't as shockingly visible the interest has been harder to sustain. Even so, DES does get the odd big news & media mention ongoing eg it was a storyline in that popular Midwife to drama way before it had its thalidomide storyline this year. And the indepent (or was it the guardian) did a feature on des a few years ago. One reason media can still be interested is that as we've gone into menoause even more rare cancers etc have sufaced (no one anticipated this, although the hormonal changes of menopause of course fit with it). There are good support groups for des offspring in the USA, Holland, France, Australia...

    When I moved to the uk in my 20s in the 1970s, the NHS blanked any mention I made of des and the advice my gyn's in phila had given me to have annual smears etc because of my adenosis etc...Drs here literally pretended des didn't exist. But when my infant onset lupus diagnosis was recovered 5 years ago, all of a sudden my NHS gyn (I was being seen regularly @ vulva clinic due to lichen Sclerosus) announced that from then on I was to have annual colposcopies...a gyn nurse @ the clinic showed me the NHS protocols binder page devoted to monitoring of des daughters....I was shocked! Anyway, now I am annually monitored. And I'm a huge cynic!

    It's said that thanks to the des & the thalidomide scandals, drugs testing rules tightened a lot...well...maybe?

    You've got me pet subject...πŸ€—

    Back to prepping for tomorrow

    Take care

  • Phew. I missed that bit on Midwives. I saw the one this week though. It's got to have been frustrating for you. Oh, one thing I did find out that might be useful sometime - when I thought they were going to try and get the biopsy of the uterus through the cervix, in the gynie office, I got some valium and Ibuprofen to take an hour before my appointment so was much more relaxed about it (only to find they wouldn't attempt it once they looked LOL!) but apparently most women go without any pain relief at all. I still had memories of them putting in and taking out a coil many years ago!

  • Oh boy...thanks for the thought (means a lot)...yes, I've learned these tricks the hard 1st NHS colposcopy was really badly botched (not my fault: I was relaxed...the surgeon just botched it...had to be referred to gyn physio for rehab (pulsed shortwave diathermy). Took over a year to recover)...thanks for reminding me: must tell physio about this tomorrow!

  • Oh ouch! We really are at their mercy, aren't we. I'm having my shelf pessary taken out and put back in for the first time on Friday and I'm even going to take a valium and Ibuprofen before I go LOL! I do have faith in my gynie though but it's just that it's the first time I've had this pessary taken out and have read that 'it's more difficult' so I'm making life as easy for myself as I can LOL!

  • I am, just finished reading the Mayo clinic info on both cystoceles & rectoceles..studied the diagrams...and the types of pessaries + how the pessaries fit...

    My next ?s were going to be for the physios tomorrow:

    are pessaries permanently fitted


    Oh whatnext: so, you're having this pessaries out/in done this Friday....

    What are we like

    Will be thinking of you!πŸ€πŸ€πŸ€πŸ€

  • Right - a very quick lesson in pessaries. There are all sorts. If you want to remain sexually active you may be able to get a pessary that you remove nightly or every few nights. If you have a ring pessary (that will support an anterior and posterior prolapse) they say that you can still have penetrative sex but I'm baffled as to how. Apart from the pessaries that you can take out every night or few nights, the others, including the ring I just mentioned, generally are left in for several months - even between 4 and 6 depending on the gynie, and then they take them out, check them and check that the vagina is fine, and put the same thing back. They don't always find the best pessary on the first attempt at fitting. When I had my ring before surgery it was on the first fitting, but after the surgery (surgery does complicate it because it changes the shape etc. of the vagina) it was the third attempt. But once they've got the one that's right for you, it's bliss. The big thing is to relax when they're putting it in or taking it out. Thank you - when I'm flat on my back and thinking of England, I'll think of you too LOL! I do hope your appointment goes well. The best advice I can give if you do have a pessary is that they often prescribe oestrogen pessaries or cream (telling you there are no side effects) but you've only got to look on prescribers information for Vagifem, which was the oestrogen pessary I was given - to see there are risks, and these days there are plenty of safe alternatives, so do your homework on that:-)

  • YOU ARE A GEM: just what I need...will study this & feel even ppbetter prepared tomorrow: THANKS AGAIN FOR EVERYTHING πŸ‘πŸ‘πŸ‘πŸ‘πŸ˜˜πŸŒ·πŸ€

  • Read your last reply before bed & slept on it...answers all my ?s. Tossed & turned a bit...can't wait to get the appt over with

    Vagifem: oh boy...all those decades when the NHS was telling me des wasn't important...they were giving me stuff no des daughter should touch if she wants to avoid our rare cancers (oral birth intolerant & HRT). And when I began to have big probs with urological leakages the NHS also tried me on topical hrt inc vagifem: I came up in horrific rashes all over my stopped that pronto. Now I'm better informed I know des daughters must totally avoid all that stuff. Now, meeting you & discovering your story...I feel ultra lucky...the odds were against me, but so far I seem to be ok gyn cancer-wise...but the NHS seems v concerned (hence the intensive monitoring)

    Is there any chance your mother took DES while bearing you? Your story is v similar to those of many des daughters'. Have you ever been told you have a T shaped uterus or an oddly shaped cervix?

    Can't thank you enough for yesterday...

    Take care


  • No, I don't think my mother had DES but she did have high insulin because she was a type one diabetic and in those days very few were able to have children and she always thought my blood sugar was on the low side because of that. I'm so glad you're OK so far and hope that situation remains. One of the things I think every woman needs to know is if her cervix is open or closed, because if it's closed you just don't get those warning signs of bleeding from the uterus, but I definitely felt unwell for a few months before they sent me for a scan, so I realised after that it HAD to be the cancer that made me feel unwell. Just more tired and drained and weak than usual.

    But the brain is a wonderful thing. I thought after the cancer I'd be dwelling on it for years, worrying about a recurrence, but partly because I had a low grade and stage, that made recurrence less likely, I found I could logically look at it by asking myself was I anymore likely to get a cancer, including recurrence of that, than anyone else, so it wasn't worth dwelling on. I think the brain helps us make the best of situations:-)

    But I do hope it goes well today for you!

  • Coco all the best for tomorrow and to you whatnext1 for the future. You've both been through a great deal and yet you both sound cheerful. My thoughts will be with you. Let us know how you get on please. πŸ’ 'M'

  • πŸ‘πŸ˜˜πŸ€πŸŒ·

  • Wow.Thanks for all the excellent information to all on here.

    Gp is going to do a hurry up on my referral for the above probs,been waiting long enough since they sent referral,so just at the starting point with all this due to a mix up .

    It really beggars belief!!!

    They sent my appointment to someone with same initials and d.o.b, who actually turned up was told nothing wrong with them,apparently she didn't even ask why she had an appointment ,so of course I or she ? was discharged leaving me to go through whole referral all over again.

    Have stopped seething now so doing as my wonderful friend barnclown does prepping for when I do get appointment want enough knowledge to make every minute of it really count.

    So any pointers as what to prioritise ,request or insist on at first appointment greatly appreciated.


  • πŸ€—πŸ˜‰ what a DOOZIE of an experience...absolutely BONKERS!!!

    Seething is RIGHT

    will have a think & get back to you...first gotta see what this physio makes of me

    Goodnight πŸ˜˜πŸ€ 🐝 (this is me: a flippin busy bee: this prepping is WILD)

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