Hello.
I suffer with stage 4 endometriosis and have had a few quite extensive operations.
I have been diagnosed with an overactive bladder as a result of nerve damage caused by the surgeries and disease.
I’m awaiting further investigations into my bladder.
However, whenever it gets too full and even worse there’s no toilet around to get to quickly I am in absolute agony before passing the urine and for days afterwards.
Does anyone else have this problem?
I also have this problem and a full bladder is indeed an emergency; it's very painful! A laparoscopy confirmed that I have extensive adhesions (from both endo and previous operations) which have tightly bound all of my internal organs to the abdominal wall. I suspect that adhesions have a lot to do with this extra pain and it might be the same for you as well since endo aways causes adhesions. Have you had a lap done since these symptoms started? Sometimes it's hard to see exactly what's going on through a laparoscope so don't get discouraged if you can't get a quick diagnosis. Also along with the pain from a full bladder, I become very nauseated if I can't get to a bathroom right away.
Thank you so much for your reply.
I’m so sorry to hear of your endo trouble and pain.
That is exactly how I feel, it makes me feel nauseous too!
I never even thought about adhesions but they would explain it.
I’ve had very dense adhesions everywhere each time they’ve operated pulling everything in weird positions
I’ve had four operations and they’ve been quite extensive the last one they removed left ovary and both tubes so my consultant has said because of the nerve damage any further surgery may do more harm than good and he would only do a total hysterectomy and remove the remaining ovary.
Best wishes to you xxx
I'm so sorry to hear of your troubles. If I were you I would avoid any future surgeries if possible. At this point you could wind up being far worse than you are now. I asked for a hysterectomy but my doctor was quite adamant when she said that I should never have any more abdominal surgeries (that was my only choice for a hysterectomy). Even a laparoscopy is dangerous for people with dense adhesions. When I had one, the doctor unknowingly cut my ureter, sewed me up and sent me home. I developed peritonitis and appendicitis and wound up having a life-saving laparatomy to repair the damage. All of my organs had shut down and I briefly died and came back. It was two years before I was able to eat a full meal. The effect of this mistake was life-changing, to say the least. I was never the same, Now that I'm in my 60s and post-menopausal, I am doing so much better! I began menopause at age 52 and the endometriosis was going strong for nearly two years afterward. But now I'm dealing only with hot flashes and other age-related problems but it's much easier to deal with. Endometriosis stole 7 years of my life and made me lose my house, my job, my fiance, my money, my belongings. It was hard to start over at my age but I'm getting there! We should all get medals for the things that we have to overcome!!
Wanted to ask how you cope with painful adhesions and what treatment /meds you use?
I'm completely fused internally causing restricted Abdominal movement and Dysfunctional bowel and bladder. Had many ops to separate adhesions but no longer an option due to risk of complications.
My physio does Visceral Abdominal massage, it's quite painful at the time but I get about 2wks of slight reduction in pain. I also get botox into pelvic floor to help ease Bowel spasms and pain and bladder neck injections to help with incontinence.
At the time of previous surgeries adhesions were never discussed, if I knew then what I know now I definetly would have second thoughts!!!!
My adhesions are just like yours and have caused endless bowel and bladder problems. I contributed to forming the The Adhesion Society, which made me feel good about informing others about the pain from adhesions. Too many doctors tell us it's all in our heads but of course, that's not so! I would advise you not to have any more surgeries if at all possible. My doctor said that because the adhesions affect my bowel so severely, that any future operation would require that I have a colostomy. Well, I sure don't want one of those if I can help it.
I have just learned to live with the pain - I wish that I could offer better advice. I have heard that stretches and massage can be helpful. Because I lost everything after getting endo and adhesions, I wasn't financially able to seek treatment. I'm now in my 60s and starting all over again. My mover lost everything that I own - that's another story though. It sounds like you're already getting aggressive therapy but I wonder if there is something better for you. I had a telemedicine consultation with a pelvic pain specialist recently. I now have pudendal neuralgia (it's 24/7 pain and lots of it) and he's been successful at helping many women with pelvic pain problems. He is based in New Jersey, which is about a 3-4 hour ride for me (I'd go that far for relief, for sure!). Where are you located? There are resources online for pelvic pain specialists, and good ones too. I'd love to see you have more options for better and long-term relief.
When I have to have a bowel movement, I don't feel "normal" sensations. Instead, I have gut-wrenching pain - that's how I know that I need to go to the bathroom. I have several urination issues as well, and I can't ever be far from a bathroom. I believe that adhesions are the root cause of all of those bathroom-related issues but since surgery causes even more adhesions, it doesn't make sense to try to solve it that way.
Have had endo and extensive surgeries also. I have overactive bladder and incontinence complicated with adhesions on bladder, Bowel, pelvis and abdomen.
Surgeries no longer an option due to risk of complications.
What really helps with bladder is "bladder neck injections", Lasts about 3mths and the difference is quite noticeable. I can now hold on for an hour before going to loo, and leakage is much less. So long as I clock watch and always know where there is a toilet when I go out it has been such a relief.
Was due my injections just before covid but my appointment was cancelled. Back to endless pain and 4/5 pads an hour. It really made me realise just how effective treatment was. Hopefully things get back to normal soon!
Ah that’s really interesting- thank you. Was that provided under the care of a urogynaecologist?
I had my first appointment with one the day lockdown was announced so none of the planned further investigation or treatments have been done yet.
She had also referred me for some internal physio to make pelvic floor less tense but haven’t had that yet.
Also told me to follow an alkaline diet which has helped a little.
For my daily pain I take zapain (cocodamol) 3 or 4 times a day and pregabalin twice a day and when nothing makes a difference I take tramadol.
Let’s hope they reopen all public toilets soon. I have a radar key for the disabled toilets and even they were blocked off which I think is awful!
Thank you again for you advice I really appreciate it.
Do you manage to work with your pain? I’ve been signed off since December because sitting for long periods has become impossible and now I don’t even know how I did it especially between needing toilet 40+ times a day.
Best wishes to you xxx
Yes I see a urognaecologist and my colorectal consultants in a joint clinic which is great it's not separate appointments. They consult together with me and plan what's best to help me manage my conditions. Makes sense as all "insides" are affected.
I also attend a specialist womens physio have been attending about 4yrs now, without her I don't think I could cope!!!
She performs Internal/external vaginal trigger point therapy as my pelvic floor locks in painful spasms, cannot sit for even short time and it affects Bowel and bladder functions. (levator-ani syndrome).
The combination of treatments really helps injections last about 3mths it doesn't eradicate pain but makes it more bearable and have less flare ups.
I was working until 5yrs ago but very sadly had to give up my job (pre-5 teacher) as my conditions became too debilitating.
It's not all bad news, I now paint, read and before covid got to spend more time with family. I have to work hard to remain positive, as some say life's too short!!!
Hope our treatments restart soon and you benefit from seeing physio!!.
Oh that’s good and makes perfect sense to have the appointments altogether, I wish my consultants would do that it’d be so much easier!
Is that something they arranged or did you request to have them together?
I know with my operations they needed bowel surgeon, gynae surgeon and one other.
My pelvis goes into spasms too it horrible, and just takes the smallest wrong movement to trigger it.
Exhausting!
Aw I’m sorry to hear about your job.
I’m glad you’ve found nice ways to spend your time.
I did some painting recently for the first time since school and really enjoyed it and was a good distraction.
I’m going to be resigning from mine soon, keep putting it off but the issues I have are permanent.
Whereabouts do you live? Only asking as some areas seem a lot more advanced than others with treatment xxx
I stay in West Coast scotland. It was my physio who arranged appointments with urognaecologist and colorectal docs.
5yrs ago I had a hammaerage from my Colon and a long stay in hospital. The male consultant was arrogant, rude and had a god complex!!! He dismissed me by saying he couldn't perform miracles or surgeries to help me so he referred me to a pain clinic. That's where they send you when docs don't have a clue!!!
So physio suggested changing hospitals and I now have a wonderful all female care team, makes sense as they truly know the female body!!!!
I had a hysterectomy aged 26 and 13 subsequent surgeries, so I've got to know my body's aches and pains quite well, so I was able to get tests, treatments fairly early on.
Hope you get treatment soon and look upon leaving your job as a liberating experience!!!
Oh what a horrible experience you’ve had, it’s disgusting the way some doctors (that don’t know it all despite what they believe) treat us.
Wow that’s a lot of operations, well done you for coping so well that takes a lot of strength!
West Scotland is beautiful part of the world. I went on holiday there last year.
I’m so glad it sounds like you’ve now got a good team of medical staff working with you.
I’m in Cheshire and it’s frustrating as I’ve had to go resort to going private to get actually listened to and treated.
Xxx
I was fortunate to go private for my last surgery due to my husbands employment.
I had been fobbed off by the NHS and I was desperately unwell massive weight loss and unbearable pain. You know that way, you just know something isn't right.
The consultant was very honest and advised risks were high of complications as he wasn't sure what he would find, after discussion we went ahead.
The outcome was shocking, massive adhesions organs fused, pelvic repair, appendectomy and twisted Bowel, I was a complete mess. 7days in Intensive care and a year to recover.
I fully believe that man saved my life, the care I received was outstanding. Sorry to say it but it put the NHS to shame!!!
I do have life long complications but I trust my docs this time around.
Wish you well and you will notice a big difference going private. When they asked me how could they help me and shook my hand I knew I would be all right. Stay in touch let me know how you get on. Stay well!!
I just did a quick read about levator-ani syndrome and the symptoms sound similar to my pudendal neuralgia. I was a little angry when I read that one should use a it's bath for relief (I was told that as well). It seems so damned dismissive. Some of these medical sites need better information. Best of luck to you, I hope that you are cured of your pain.
It should have said "a sitz bath" - stupid autocorrect!
Wow, that's great that you're getting such relief! I wonder if that will be covered by Medicaid? That's what I have for insurance now. I hope that you can get back to your regular appointments soon! Best of luck to you!
I have pudendal neuralgie and overactive bladder because of endo operation , had for 3 mounths bladder pain its such a heavy pain i don t know why it got over. I wosh you luck for surching enlighment
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