Help please!!!!! Any storms ideas are welcome!!!

[Carol18]

Hi everyone 11 months ago I was whit a horrible internal hemorroides for 3 months but those was painful , and before this a pilonidal cyst, no surgery. During the 3 months of hemorroides something weird happened whit my bladder like first peep a lot, no pain, next UTI symptoms 1st for one day symptoms, 1 week later again for 2 days and again for 5 days 1 month no symptoms and return but this time really painful bladder pain spasms,each time I was in my family doctor ,UTI test no infections, visit urologist he saw inside my bladder and he said look fine inside , so IC was my diagnosis ,star IC diet, desert harvest pills feels better, some flares not relate to nothing.
Hemorroides better so I decided to star to sit in right way and no just in the left side, this is the time everything get worst that day in the night sharp -knife pain in my coxis was horrible , everything in my pelvis star in pain, the time pass sharp - knife pain get away next day but my bladder ,my anus etc pelvic pain, flares every time poop.
Visit specialist in Pudental nerve urologist-ginecology , he don think it's IC thought Pudendal irritation he is not sure about it because he did internal and external test for PN but not pain ,I can have painless sex whit my husband, he wants a second opinion fron other PN specialist,send me Physical therapy specialist in IC and PN she has been working in my really tight pelvis, fascia problems , and move my pain a lot , from all my pelvis pain now my flares are in anus sometime,pee a lot but no more those spasms - pain bladder,I can bend, I can lay down in my back some times I have a flare in my anus area but no that bad like before;it's for sure PT help me a lot I was to star to alive again until 1 month ago new symptom clitoris pain -mons pubis, pain whit organs all that area, no whit penetration, pees a lot irritating the pain, hot pad has been help me a lot whit pain.PT sayed she don't know we're this come from, still working in my pelvic she want to me try to sit a again for 8 months stop sitting, I just lay down in my belly now in my back no so comfortable for anus symptoms and no more in my sides because a feel irritated the bladder. Pilonidal cyst return was drained in emergency now fine, one external hemorroide no to bad. So PN can be better whit PT? Can be irritated other branches that were not before like for me that clitoris? PN can be for days good and pain again but in my case pee a lot, anus and now clitoris and again feel Almos nothing and again flares? When I star PT I was in moments during the night like 10 11 pm in friends house or making love whit my husband and NO flares next day , it's this normal whit PN? Is normal whit PN have pain since morning and feel better through the day, or feel good morning, bad through the day and better again in that night?
Please help me I don't know what happen whit me no surgery in my body, never problems whit infections so where did this come from PN-IC everything star whir pilonidal cyst and internal hemorroides.

Help please!!!!!!!!!

[Violet M]

Carol, most people say they feel worse as the day goes by -- feeling worse at night. Yes, PT can cause a flare-up. Before I knew about PN my PT told me to do stretches and I think it made me worse. If you think something is making you worse then you probably should stop doing it.

Violet

[Carol18]

Hi Violet,
Thank you for be here for us, violet I feel better thought the day , and sometimes better in the night , or good all day or all week, it is this normal for PN?
My other question whit PN it is normal to feel better whit 3 months of PT, because in my case since I star PT my pain it has been move a lot for weeks , some symptoms get away like tinkling ,pain after bowel movement, I still have symptoms but no so intense, I can tell for sure that I'm better now in comparative when all this star in last summer and the difference was PT .
I confuse because I don't know why now the symptom of burning in my cliroris and urgency whit my bladder, if for 3 months I has been so good , my PT since I star whit her talk me that she no think it's PN and still said , but why those flares?
She talk me that my fascia was terrible and tight muscles in the pelvis.

Thank you .

[Violet M]

Carol, I'm sorry, I can't say for sure. When your PT presses on the pudendal nerve at the ischial spine or the Alcock's canal is it painful there? (Your PT should know where those places are). If those areas are not painful, then maybe it is something else and not PN you are dealing with. Maybe it is pelvic floor dysfunction due to your muscles being in spasm after having the hemorrhoid pain. What does your doctor think?

Violet

[Carol18]

Hi Violet,
I return today from my PT she presses on the pudendal nerve at the ischial spine or the alcock's canal, and no pain at all, Dr Seyed Shobeiri say that same no pain in the internal vaginal and rectum examination , that is why send me second opinion whit Dr Marvel , but first PT ,it's we're I' am right now, my PT want to try needles whit me and Valium suppository , she say still tigh pelvic muscles she need to relax the muscles.She mention that pelvic floor dysfunction so we go see and the end of the PT, needles and Valium suppository.

But symptoms are so similar to IC or PN , bladder, anus, clitoris, etc it is so confuse , because I have all those sensation/ pain in my pelvis that I think is the PN but when they presses internally along the course of the nerve it's no pain HOW it's possible?
It is normal no pain in the internal examination whit PN?

Thanks

[stephanies]

Hi,

I saw Dr. Shobeiri about a year ago and was told that soon after he stopped seeing pudendal neuralgia patients and was focusing his practice elsewhere. It sounds like you saw him for pelvic/PN pain, is that right? It is always good to know what doctors are available for PN patients since there are not too many.

Thanks,
Stephanies

[Carol18]

Hi stephanies,
Yes he is here in Virginia and when you looking for him here they said no pelvic pain patients or pudendal neuralgia patients, but I made my appoiment whit him for pelvic pain and he accept me,so I take my chance whit him and thank you God everything was good, he his so nice listen all my history ,really gentle in the examination, he is great, I was so worry because the close one for me is Dr. Marvel in Anapolis Maryland but the reviews about him are terrible complete different from Dr Shobeiri , Dr MArvel no gentle at all.
But maybe in the future I have to see Dr Marvel for second opinion, Im waiting for my results for PT so far it has been great but still symptoms, we go see.

[Violet M]

I'm not sure why you have no pain along the course of the pudendal nerve at the ischial spine or Alcock's canal. Can't remember if you posted whether or not you had an MRI of the lumbosacral area or lumbosacral plexus to rule out any pathology there that might be the source of your pain. What about any pelvic misalignment or sacro iliac joint dysfunction that might be contributing to your symptoms? Has that been ruled out?

Violet

[Carol18]

Hi Violet ,
I attach the MRI DR,Shobeiri request for me , he think it's nothing wrong whit the results, PT think it's inflammation the liquid close to the coxis, I going to ask tomorrow to my PT about pelvic misalignment and sacroiliac joint dysfunction, but I think she was talk me no problem whit this, I'm going to ask tomorrow. Let me know what you think.

Thank you.

[Violet M]

Hi Violet ,
I attach the MRI DR,Shobeiri request for me , he think it's nothing wrong whit the results, PT think it's inflammation the liquid close to the coxis, I going to ask tomorrow to my PT about pelvic misalignment and sacroiliac joint dysfunction, but I think she was talk me no problem whit this, I'm going to ask tomorrow. Let me know what you think.

Thank you.

An MRI wouldn't necessarily show SIJD or pelvic misalignment. I don't know if the soft tissue fluid and edema are part of the cause of your pain but I wonder if the sitz baths I talk about so often on the forum would help to resolve some of that inflammation and edema. Put some epsom salts in the water too. It could take some time before you notice a difference but over time it might help with healing that inflammation. And it seems like PT might be important too -- in case there is a misalignment or musculoskeletal component that is causing the inflammation and edema. But if the PT can help mobilize those tissues it might help to resolve the fluid and inflammation.

Violet