I can’t take it anymore

[Needhelpbad]

Hello, 27 year old male. Type 1 diabetic. I got a large hydrocele that radiated into inguinial canal after helping my friend move in 2021. I carried it for 4 months because I was scared of surgery. Finally got it removed. But a couple months after I started having issues maybe like February 2022. Was having issues starting flow and with constipation(especially after I would masterbate. Come august I was gaining weight because of the constipation so I went to urologist. He said I had a hypertonic pelvic floor. Started doing stretches. They helped a little but nothing crazy. 2 months in I finally got a yoga mat and had my girlfriend push me down in happy baby pose. She did it horribly. Not sure if this is what caused it. I also tried meditation for the first time that day and just kept trying to relax pelvic floor just let go and relax. Maybe I was reverse kegeling slightly. Ever since then my life has been a living hell. I tried to keep relaxing it during a movie afterwords as well. Started getting this burning lactic acid/euphoric sensation in perineum. At the time I assumed it was due to finally relaxing my pelvic floor for the first time correctly. Well it’s never left. Within a few days it turned to leg weakness and some numbness on the top of my foot. I kept kicking out my foot and eventually it went to a toe. And moved but has been there ever since. Luckily the leg weakness went away but my initial diagnosis was sciatica, then I got an mri done only showed minimal bulging discs and trace retrolithesis on l5-l4, l4-l3, l5-s1. So I went to a neuro surgeon he said that it shouldn’t be causing my symptoms. Went to a neurologist. She diagnosed me with diabetic lumbosacral neuropathy which didn’t make sense to me so I kept fighting that because it started while relaxing pelvic floor. They also ruled out cause equina. So eventually I went to another neuro she diagnosed me with CIDP. Which I also thought was BS. Went to another neuro. By this time leg weakness was gone. But there was some slowed velocity. He said maybe mild diabetic neuropathy but shouldn’t be causing any of my symptoms and he ruled out cipd and lumbosacral neuropathy. Went to a Chiro that week when he cracked my back it made every thing worse. Symptoms spread to upper body. Tongue was vibrating at one point. Started getting more increased temperature sensations in legs. Wetness sensations etc. then started getting stuff in arms. At this point I am pretty freaked out so I seek another opinion they rule out MS with blood work and brain mri. Went to a rheumatologist who also ruled out everything. Not to mention day one I thought it was pudendal neuralgia based on the symptoms but they told me sciatica and then kept telling me different things so I assumed it wasn’t. Anyways eventually went to University of Miami. He said I had small and large fiber neuropathy. Which idk if I do. It shows slowed velocity but every emg I have done they have had issues warming up limbs. Think maybe I have Raynauds or something. But either way started treating it like it was diabetes causing it and have gone on a pump since. 0’improvements if anything feel like I am getting worse. Can’t sit anymore sits bones kill me the perineum flares up and more temp sensations in my legs. Also get these vibration like sensations. Anyways have gone to 3 pelvic floor pts. Have not improved even 1 percent with any. I kinda feel like my back is causing this but have gone to 2 neurosurgeons and 2 orthos and they both say no. Have even gone to a physiatrist. So I am out of options. I recently was told pudendal neuralgia finally which is what I thought it was. But what doesn’t make sense to me is I got it while relaxing my pelvic floor in my opinion. Even when I just let go and relax pelvic floor I get the same initial sensations from when meditating. Almost feels like my perineum can’t come down and is stuck on something. So I got my first injection from pelvic rehabilitation medicine. Did nothing. Have 6 more. On the supositories and lyrica. Does nothing. Feel doomed only in my 20’s just started career. Feel like I will lose my job relationship etc. not sure what to do at this point. I never seem to find anyone who actually gets cured. Reddit doesn’t help. Even a 50 percent reduction in symptoms isn’t enough. What do I do! Will I ever be actually able to sit again watch movies shows etc. I can’t live like this anymore. They have already told me it’s not entrapped. Please help.

[Violet M]

Hi, sounds pretty scary what you are experiencing. Since you have a lot of symptoms that aren't pelvic related it's possible you have more than one thing going on which is often the case with people who have pudendal neuralgia. You can have pudendal neuralgia without having an entrapment. To determine if it's PN that's likely caused by entrapment you can check out the Nantes Criteria. https://www.pudendalhope.info/sites/def ... iteria.pdf
Since your symptoms started soon after moving someone and then having pelvic surgery you have to be suspicious of it being at least partly due to an injury, although people with an underlying condition such as Reynauds or some type of neuropathy, may not heal as well from an injury. So you may not be able to pin it down to just one thing but could consider a combination of things, especially since you are having a lot of symptoms that aren't pelvic related.

On what basis do your PT's think you don't have an entrapment? Has your pelvic floor PT done an exam via the rectum to press on the pudendal nerve at the ischial spine? Is there tenderness there?

You said you had an injection. What kind of injection, to what location, and what medication was used? If it was a pudendal nerve block did you have any lessening of pelvic symptoms even for a few hours? If you have PNE or PN - you should at least see a temporary reduction in symptoms if the injection was properly placed. However, I see pudendal nerve blocks as primarily diagnostic because at least on our forum, not many people get long term relief from them. You said you have 6 more injections planned. Some PN doctors recommend no more than 3 injections containing steroids due to the possibility of nerve damage from the steroid. Do you know if there are steroids in the injections?

Since you have a hypertonic pelvic floor, have you considered Botox or trigger point injections to get the muscles to calm down?

Here are some ideas for constipation. https://www.pudendalhope.info/node/32

Obviously you want to heal completely and move on with life, but sometimes while you are healing you have to treat symptoms, even if you can't find an exact diagnosis. If the drugs you are using aren't helping at all, maybe your doctors will consider some other options like an SSRI, tricyclic antidepressant, tramadol, or buprenorphine just to get you through temporarily until you can find the right treatment.

If it is pudendal neuralgia without an entrapment there are other options you haven't tried so it's too soon to give up. If you match the Nantes Criteria you might want to consider traveling to a PN surgeon for an opinion.

Violet