Pudendal nerve and constipation - Pelvic Pain Suppo...

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Pudendal nerve and constipation

Liz_2018
Liz_2018
48 Replies

Does anyone have any constipation pain that affects both your rectum and your vagina? Even when I have to use a enema I can feel the coolness of the liquid sensation in my vagina. I just had a colonoscopy and check up and everything was ok. I explained this issue to the physician and he asked me if I had any stool leakage from the vaginal area which I don't so he didn't have a clue. I have a constant fullness in both areas all the time even when I'm not constipated which makes my pain even more unbearable. And when I do have a bowel movement it irritates my vaginal area and it feels like it could come out of that area.

48 Replies
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Kphee21

Hi Liz I have the same mine is down to prolapse I’m sure not pudendal nerve though I get obstructed defecation and have to use enema I can feel every sensation in my vagina

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Liz_2018
Liz_2018
in reply to Kphee21

Hi kphee21, Thank you so much for replying. I didn't even think about getting check for a prolapse. I had a Hysterectomy and a bladder lift in 2010 and they put a tvot mesh in me I had it removed in 2015 I've had constipation problems I used to have to in impact myself to go plus a lot of straining now I can't go unless I take a bunch of laxititives then use a enema. I've tried all the opioid laxatives and none of them work. The gastrenologist said it's because of my pain and the nerves and possible pudendal nerve entrapment. I just read up on the prolapse and a lot of my symptoms fit. I have an appointment with Kelly Scott UTSW The Treatment of Chronic Coccydynia and Postcoccygectomy Pain With Pelvic Floor Physical Therapy. Hopefully she'll be able to finally get me some help and relief I need and then if it is pudendal nerve entrapment then I'll have to go from there. I just know right now everything I've done with the pudendal nerve, the blocks etc isnt working.

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Kphee21
Kphee21
in reply to Liz_2018

Hi liz I had hysterectomy 17 weeks ago and things have got worse like you I have had injections but to no avail I do have pelvic floor decent but sur I have rectal prolapse or enterocele either way it’s agony I have to use laxatives and enemas to empty rectum but enemas seem to cause so much irritation

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Liz_2018
Liz_2018
in reply to Kphee21

Hi Kphee21, I hate to hear that you had to have a hysterectomy also. I keep reading post about women having issues with pudendal nerve because of having a hysterectomy but also because of having a bladder lift using mesh. And now that you had mentioned about a prolapse it fits my symptoms also. It's so confusing and hard to find a doctor to pin point exactly what the heck is wrong with me. I'm praying that you find a doctor soon that can get you healed up and on your way to a pain free life. It's been 7yr 8 month nightmare for me.

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Kphee21
Kphee21
in reply to Liz_2018

Hi liz I had ny hysterectomy after they thought I had pudendal nerve pain I have had injections into the nerve but no use my pain escalates when I get obstructed defecation that seems to be every day at the moment I’ve not been suffering as long as you mines been 3 and half years but seems like a life time it takes so much away from you doesn’t it...I’ve got myself in a bit of a dark hole this few weeks trying to snap out of it x

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Liz_2018
Liz_2018
in reply to Kphee21

Sweetie any length of time in pain seems like a life time. I understand your pain believe me. I've been in that dark hole for a long time. It's hard. And it's hard to act like nothing is wrong when everyone is around when all you want to do is cry. My life right now is living in my reclining in my recliner on my side with a ice pack between my legs waiting for the day to be over with so I can take sleeping pills to go to sleep because that's the only time I'm pain free. I'm here if you ever need to talk. Hugs

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Liz_2018
Liz_2018
in reply to Kphee21

Hi Kphee21 did you read Lexi post to me about the tea for the constipation? Its called smooth move. I looked it up and they sell it at Walmart and other places. I'm going to give it a try. They're are different kinds I may get a variety and see which works the best if they work fingers cross. It can't hurt to try. Tried everything else.

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Kphee21
Kphee21
in reply to Liz_2018

Hi liz I did read lexis post about smooth move I had a quick look last night and as I’m in the uk stores don’t seem to stock it will see if I can get it on line anywhere

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costagran
costagran
in reply to Kphee21

what about senna tea.

my bowels dont work unless i have a cup of coffee first thing in the morning.but i must remain relaxed in bed. or a packet of pumpkin seeds an hour or so before bed.

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Kphee21
Kphee21
in reply to costagran

Unfortunately I can’t drink coffee I wish I could but I will try the pumpkin seeds

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Liz_2018
Liz_2018
in reply to costagran

I didn't know they made senna tea. I'll have to try that. I've tried coffee even though it causes pain to increase and no luck and the smooth move didn't work either.

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Kphee21
Kphee21
in reply to Liz_2018

Awe liz it sure is life changing isn’t it where in the usa are you? I’m manchester uk. Yes ice packs are my best friend too have you had any treatment for it liz

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Liz_2018
Liz_2018
in reply to Kphee21

Kphee I'm in Texas, I am going to order from Amazon it's to hard to shop at Walmart. As far as treatment gosh seems like I've tried everything. I did the pelvic floor therapy in 2013 for about 2 months and she's the one that told me that my pudendal nerves was the cause of my pain. After the sessions I felt good but as soon as I got in the truck to drive my pain returned. I did the medicated vaginal suppositories, did the bladder instills. Then in 2017 I had a medtronic nerve stimulator implant I thought my prayers were answered I got 100% pain relief he put the leads in my sacrum but after 3 weeks my pain came back. We tried so many different programs and couldn't get it to give me any relief at all. He finally told me that he couldn't do anything else for me so I ended up with another pain management physician. April 2 of this year I had my leads revised he sutured them to the nerves in my back but it still didnt work. So now I'm waiting on a pain pump trial to see if it will give me any relief from this pain since the oral pain medication does nothing. Plus going to that pelvic floor specialist Kelly Scott. I do know that my rectum pain wasn't as severe until I had pudendal nerve block. I also ended up with a moderate case of interstitial cystitis after my hysterectomy and bladder lift so certain foods causes my bladder to flair which makes may vagina and rectum hurt even worse too.

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Pain63
Pain63
in reply to Liz_2018

I am also in Texas. I recently found a pelvic floor physical therapist in San Antonio who understands the pudendal nerve. She is Dianne Hargroder of Hargroder PT. I have had this pain for 7 years. I have slept with ice between my legs. I can't drive without sitting on ice. I can worsen the pain sometimes just by bending and stretching. It took away my life, my freedom.

Now, after working with the pelvic floor physical therapist, I have had a few pain free days, and then it comes back again. BUT the fact that I actually had some time without this pain....means there is hope.

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Liz_2018
Liz_2018
in reply to Pain63

I finally had my pain pump implanted on January 15th he set it to dispense the lowest dosage of duladid at first because of the risk of overdose. My pain level was and still 6-7 I was able to go back every week for a small increase went 5 times then they decided to take the duladid out and mix bupivacane with duladid and put it back in my pump and still no change only able to go back every two weeks. I had been having some hip and back pain before my pain pump implant surgery and my right leg was going almost completely numb so my doctor submitted a order for a CT scan. Back in 2013 I had problem with my back from twisting to much trying to back up a welding trailer and I had a CT scan then and my L4 showed it was narrowing so the surgeon I went to then said surgery I said no because I already had my L5S1 fusion and that would mean taking all that out and fuse the L4 and L5 together so he said ets try an epidural I'd never had one before. The reason not trying for one on the L5 is I had a annular tear and there was no other option but surgery back then of getting out of pain. Anyway this new CT show L2 3 4 all budging out and the L4 is of course is narrowing but the only one thank goodness. So this Monday 22 hes going to do a epidural. I did research and the L4 can cause pudendal nerve pain and the same pain in the same area that I'm already experiencing so this might be why I'm not getting enough relief from my pain pump. I'm crossing my fingers that this time is the answer. If not I just don't know anymore. I know my doctor is trying everything he can think of. I sure wish I could try the hemp oil it's legal in Texas now but still can't do it. If there's even a trace of THC found in my urine I'll be kicked out of my pain management and I can't take that chance. I wish you the best pain63 it's a miserable life we live especially when you don't have anyone that really understands and supports you which I don't. If I could just get to where I don't have to use a ice pack between my legs all the time and can where panties I'd be happy. I'm getting more and more incontinent as time goes on and it hurts to wear those pads or the diapers. I stay in a gown all day long or a house coat with nothing underneath

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Pain63
Pain63
in reply to Liz_2018

I am reading this while sitting in a hot bath of Epsom salt magnesium. it is almost 1 a.m. I do have a seat from "Cushion Your Assets' and I drive while sitting with block ice in the middle of that seat. I never know whether I am going to have a good day or not, so I can't get a job and I can't make plans in advance.

Life is not what it used to be.

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Tnny
Tnny
in reply to Kphee21

😢 I’m in dark hole as well

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Liz_2018
Liz_2018
in reply to Tnny

Hi Tnny, I'm so sorry, I know how you feel and It's hard not to be depressed living in pain day after day. There's got to be a cure, help, something to get us out of this miserable severe pain.

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Lexi1221

Yes I have both vagina and rectal pain for 13 1/2 years. I’m just so tired with little answers.

1 like
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Deniseshaw56

Denise56 hi just wonder if you ever got rid of your retum and vangina pain I have the same problem

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Liz_2018

I still have vaginal pain between a level 6-8 with the pain pump implant the rectal pain if I sit to long. Otherwise the pain is there when I am severly constipated and when I go and after I've had a bowel movement. I have to take 5 womens correctol every other day to make me go and then it's usually just a regular bowel movement not a clean out that I need if I need that I have to do that 2 or 3 days in a row. Then I'm incontinent in my bowels because I can't tell when I need to go when I take that many. I'm in this condition because I wanted not to be wearing diapers at this age for urinary incontinence well I'm having to now all because of that darn mesh.

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Deniseshaw56

Denise56 so sorry for your pain it’s evil I have had my 2 years I have been told mine is punderal neuropathy I have burning in vangina bladder and bowels 24 7 Xxx

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Lexi1221

I am better. We think it’s a combo of Lyrica and hydrodissection treatments I’m getting. Google hydrodissection for pelvic pain and it will be explained. I still have both vaginal and rectal pain but I can have some sort of life now. Before I couldn’t do anything. What are you doing to help yourself? Where do you live?

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Deniseshaw56

Denise56 hi Lexi I live in derby I am taking nortripline I am seeing Dr DeMello in Manchester I get really bad burning in bladder and bowel at same time bowel does not seem to work properly I have to take latatives every day but they don’t seem to be working this burning 24 7 never gone a way for two years like you have really bad cystitis but no infection all tests are normal ct mri bladder. Camera and bowel camera Did have a polyp in bowel removed that was ok I get cramping in my vangina and bowel at same time or so I get fullness in vangina and throbbing after weeing sorry to keep going on xxx

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Liz_2018

I am sorry I just realized you were messaging Lexi this board is confusing.

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Deniseshaw56

Denise 56 dont worry it lol am just asking around about these symptoms I have really getting me down x

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Liz_2018

I know Denise this pain really has consumed us. Everyone keeps saying you have to be strong well that's easier said than done. Unless they've been in our shoes they don't know what hell we're going through.

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Deniseshaw56

Dense 56. If there is so many of us with this evil pain why is the doctors doing any think about it they just look at you gone out as if. It’s all in your head xx

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Liz_2018

I know. I do have to say my pain management doctor is wonderful he is trying everything to get me out of pain. But that's what he does. All the other specialist I went to did just that looked at me like I was crazy. Even my new GYN told me last time which was my second visit that i needed to go seek mental help. First thing out f her mouth was no wonder your constipated with all this pain medication your on. You need to quit taking this pain medication. At that time I was on methadone. I was so upset I couldn't believe she was being like this to me. I told her you think I want to take medication do you think I like living like this do you think I'm making this up ??? I'm not. I wish she could be in my shoes just one day and I usually don't wish my pain on anyone. My first visit with her she was supper nice. I won't go to her again. I just wanted to knock the hell out of her. Now I've got to find a new Gyn I'm hoping to find a urogynocologist but around here I doubt it.

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Deniseshaw56

Denise 56 so sorry liz you haveing to deal with all your pain bless you I am in same boat they just won’t listen to you. You go crying to doctors and say I feel like ending it all and they say oh dear xxxx

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Lexi1221

Hi Denise, I hope you’re feeling a little better. I am still living with the same symptoms. It’s hard I know. I just wanted to tell you to try mineral oil for the constipation, it does help.

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Liz_2018
Liz_2018
in reply to Lexi1221

Lexi Can you give me a little more information about the hydrodissection I did look it up and it took me to a site with a team of Doctors that work out of New York. Is this where you go to get your treatments? Says its usually not covered by insurance. How long have you been doing this and how many times a week do you go etc.

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Lexi1221
Lexi1221
in reply to Liz_2018

Yes it does take you to NY but they explain it better than I can. It’s like trigger point injections externally given guided by ultrasound. I see a Dr Teirney who is based in San Diego. He comes to Connecticut one a month. He also goes out of the United States teaching doctors this procedure. A lot of doctors have never heard of it.

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Liz_2018
Liz_2018
in reply to Lexi1221

Thank you, I need to find out if he has taught any physicians in Texas yet. I have no way to travel out of state. It's hard enough driving 4 to 5 hour round trip to the doctors. Thanks for the info.

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Lexi1221

Yes I have had both vaginal and rectal pain and constipation for 13 1/2 years. I have burning vaginally mostly, rectally I have pain and burning. Can’t use a suppository, last time I used it I had terrible burning. I did find something for constipation. It’s a tea called smooth move. Not regular tea, you soak the bag for 15 min. and cover it. As far as anything else I really have no answers. Just hope you have a good Dr and try everything, never give up. I haven’t!

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Catherine1959

Hi Liz, I have a prolapsed vagina and I’m waiting for a hysterectomy and bladder/bowel repair. I’ve had severe constipation for years partly due to the pelvic prolapse. I have found a great cure (help is a better word) it’s called Uncle Lees tea, it’s a Chinese tea and a very strong herbal laxative. I buy it in bulk from Amazon and take a cup in the morning and a cup before bed, I let the tea bag soak for 15 minutes before drinking it. When you first start using it you get stomach cramps but your body adapts, it does cause loose stools but it’s great at emptying your bowels, this relieves the pressure and pain in the pelvic area. The one you want is in a green box, it’s not cheap but it’s the best laxative I’ve found, I’ve used it for 3 years now.

Best of luck with it, I hope it helps you.

Catherine x

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Liz_2018

Thank you so much Catherine1959 a lady just told me about a tea called smooth move I just ordered it Friday evening. If it doesn't work I'll order the Uncle Lee's. I don't mind the cramps or the price as long it will help me go. I appreciate you letting me know.

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Lexi1221
Lexi1221
in reply to Liz_2018

I’ve used smooth move and it does work!

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Tp2018

Hi liz I am quite certain that my pudendal nerve pain/damage/entrapment whatever it is, has been caused by many years of IBS with chronic constipation. Even now, my pain is directly related to incomplete evacuation and always begins in the rectum . It feels like a hot lump is stuck there and then progresses to excruciating hot pain in my vagina. Oxycodone, a hot bath and my hot pad covering both anal and vaginal areas, are all needed to calm the pain. I take 20mg oxycodone split up throughout the day and recently added 25mg Amitriptyline at night and 10mg in the am. This has helped enough for me to try doing only 10mg of the oxy each day. I want to stop the oxy, but can't because the amitrityline alone cannot stop the horrible pain attacks even with the hot baths, hot pad and lidocaine 5%cream

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Liz_2018
Liz_2018
in reply to Tp2018

Hi Tp2018, I've dealt with constipation for as long as i can remember but I never had the vaginal pain till my hysterectomy/ bladder lift with TVOT Mesh and then when I had my pudendal nerve block caused my rectal pain and each block made it the rectal pain worse. I to feel like there's always something still there stuck in my rectum area but also in my vagina. I've tried heating pads it just irritates me. Now hot baths feel great. I have to do ice packs constantly. Oxycodone is a medication I've never been on. If this combination of medication helps your pain some then I'd try to stick with it. I know nobody wants to have to take opioids but who wants to suffer in pain. I sure don't.

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saintonhigh

Hi Liz - I have excruciating pain upon defecating due to pudendal nerve damage. I get ungodly stabs vaginally to the point where it takes my breath away. I found a good pain specialist who prescribes morphine but I suffer bad until the morphine kicks in. It loses effectiveness over time so that's another problem.

I have an uncomfortable sensation of something being in my rectum. When I urinate I can't feel the area. It's bad.

How are you doing now?

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Hidden
Hidden

My symptoms are exactly the same as yours Liz (and started the same way too: urethra/bladder followed by vagina/vulva and lastly the rectum). In addition I suffer severe anxiety and muscle tension. My buttocks and thighs are affected too. I also have Fibromyalgia. I had a complete physical and mental breakdown in the summer. I felt like I was dying. I wanted to die. I had reacted severely to pain medication. My body was in shock from a myriad of vile symptoms in addition to PN pain. Each day is a battle.

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Liz_2018
Liz_2018
in reply to Hidden

Hi Ruby_16 I'm sorry your another fellow sufferer. Before I found this forum I thought I was just one out of a few dealing with all this. That's the way it seemed to me anyway when I was trying to find answers. The doctors all seem clueless and look at us like we're crazy. I was really upset when I went to a my gynecologist to get my yearly check and to see if maybe I could possibly have a prolapse. I had only seen her one time before because my regular GYN had moved. The first time I seen her she was very compassionate and seemed to care. This time she was the opposite. Told me I needed to go to a psychiatrist and get off the opioids. No wonder your constipated she said. I also told her that I had pain where my prior GYN had took off a cyst and she tried to tell me that it didn't happen there's no scar and she couldn't do it in the office. I was so depressed when I left I nearly just gave up again. I have fibromyalgia also plus Advanced Pheriphal nuerophathy in both legs and feet which radiate up to my thighs and buttocks I was diagnosed with this years before the PNE so I can't tell you if your symptoms are related but from people that I've talked to on this forum before they have mentioned these symptoms related to PN or PNE. I know that I have a different type of pain in my leg and sometimes my ankle feels like I've sprained it. I was told by a fellow suffer that it may be related. Right now I'm on Methadone 10mg 3 times a day and it has kept me from crying all the time in pain but it doesn't take it completely away. I had a pain pump trial in November and I had 100% pain relief and I'm still waiting on the permanent one to be implanted of course the insurance company is dragging their feet. I really don't want another device implemented in my body. I've already got a medtronic nerve stimulator and it failed after 7 weeks. Not because of the device but because of where the doctor put the leads. I had 100% relief also but the leads were put I my sacrum area and they moved. I h as d the leads revised and put in my back. It was supposed to be connected to the same nerves as in the sacrum but never could get any type of relief. So now it's just there. I'm like you I stay depressed all the time and I want to just die there's been many times I thought of ending it but I couldn't do that to my family. I'm an only child and I just lost my father to cancer on the 5th from cancer we found out he had it in May. Dealing with taking care of him and now loosing him has been really made things hard. He was divorced and I have only one child so her and I are all he had. A friend of mine told me they're opening CBD store here in my town and I want to try it so badly. If it would help I'd quit going to the pain clinic and just do the oil. I just don't know if it will show up in my urine test if it does it will cause me to get kicked out of the pain clinic then I wouldn't be able to get what little help I'm getting at this time. I've spent over 8 years like this and its exhausting. I don't have the support that I need from love ones either. Oh they feel sorry for me but that's not what I need. I don't need sympathy i need help with day to day help. And not to be stressed out. Stress really makes my pain escalate and if I get upset it makes things worse and then I feel like wanting to end it all over again. I feel for you and I'm sorry that your going through this also. I hate to hear that you can't take any pain medication. I have found using ice packs down there helps alot. I use one constantly unless I have to go somewhere. I don't have but a little rectum pain now I guess after several years the nerves have healed or something I can't explain it. When all this started I didn't have any pain in my rectum till I started having the nerve blocks. It wasn't the first one but the second one that I had that caused it then when I had the oblation it really magnified the pain. Of course the doctor couldn't explain why it happened and what to make it go away. Sorry this is so long and I apologize for venting. My prayers are with you.

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Hidden
Hidden

Liz_2018. Just read your sad story. I’m so sorry 😥 Finding the strength to continue requires super human powers. It’s torture.

I’ve also just lost my dad to cancer. My sincere condolences for your loss. My prayers are with you too.

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Liz_2018
Liz_2018
in reply to Hidden

Ruby_16 I'm also so sorry for the loss of your father. If you ever need to talk just PM me. God bless

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Skye22

Hi Liz I just came across your post and I can fully relate to your condition. I have bowel, bladder, abdominal and pelvic adhesions caused by 14 surgeries that various surgeons said would help my chronic pain. How wrong were they!!! Unfortunately I'm now at the chronic stage of my health problems as doctors now say any future surgery would be too risky I have been trying to cope for 30yrs. Had a haemmorage from my colon 2015 was dismissed as IBS!! 4yrs on have final diagnosis of slow transit bowel, compromised by bowel adhesions. They also found that I have proctalgia fugax which causes agonizing spasms in levator muscle, rectum and vagina. The spasms are all consuming and I have a permanent feeling of pressure in my rectum and vagina. Because of these issues I can no longer independently have a bowel motion and rely on daily irrigation treatment and manual extraction. I spend most of my time going between my toilet and lying in my bed as sitting is to sore. I have tried lots of meds with no relief and allergies to some drugs means I am limited to opiod painkilers which makes the constipation worse. I recently tried vaginal botox which gave some relief and I have a physio who does abdominal visceral massage and internal trigger point manipulation, which has the best result for the spasms. The plan is to have further botox in vaginal area and within rectum sounds like torture but I will try anything!!!! Reading a lot of these posts fills me with dread to hear of others like yourself going through tortuous pain. It also gives me some hope as we all have similar health problems we can share ideas on how different meds and treatments could potentially help. Knowing that others are out there is a comfort as I know I am not alone!! I wish you well and hope you get some releif. Sorry for the long post.😐

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willemine

Sorry you have this condition. I have simular conditions and i have a prolaps between my rectum and vagina who fills it self by bowling moments i have to pusch it back with a toiletpaper to release myself. They can axemen it with putting yell in it and make a echo but the yell is not the same substance as feases and by me it didn t fill the aria from the prolaps . The prolaps i not always to see only when its filt. The feeling of fullness and the pain can also be a signal for pundendal neuralgie. I have that too. I wish you the best

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glenbanchor

Yes me too these sound like my problem too. Pain when urinating burning sensation very often but not always. Supposed to take HRT suppositories in pill form only answer from doctor so far. Slight prolapse been told. Topical Estrogen works I think a bit but such a pest to insert nightly for a fortnight then twice a week.

Tried eating only alkaline foods seems to work also gluten free foods less bowel irritation and frequency. Don't drink coffee. Don't eat oranges either. Try Sweetcures pill to make food less acid. Seems to work quite well. Managed to get Nitrofuritin from " Post my Meds" for urine infections when suspected. Get fed up with doctors getting no where with them. Self medicate with Vagisil or Germoloids for piles.

Feel like others a bit desperate wondering what to do next.

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