Pudendal medications

[Bestill]

Hi. What medicines are working for your pain. I’ve not been diagnosed with PN, but my symptoms are pointing to PN. I am currently taking Pregabalin 400 mg daily and Fluoxetine. This is such a horrible situation. I’m trusting GOD for complete healing! Thank you in advance for your responses.

[2977reader]

I have been diagnosed with PN. I am taking 25mg of Amitripyline, which is taking off the intensity of the symptoms. It is brilliant for making you fall asleep and stay asleep. It also seems to help with the urgency to go to the toilet. You can go up much higher 70-80mg.

I have found movement to keep the hips loose to be really helpful. Also, standing rather than sitting. I have had it for 8 weeks and with the help of the medication and decent sleep, am beginning to acclimatise to the fact that I have it. Know how hard this particular type of pain is but know also that many people adjust their lives and learn to live with it. Hope is so important. I will have a nerve block if my PN worsens.

Wishing you all the best.

[Bestill in reply to 2977reader]

Thank you so much for your reply❤️ I appreciate it so much. I did Amitriptyline a few months back, but was having some urinary retention it seemed, but maybe it was something that would have adjusted with time. I do want to try Amitriptyline again. I’m sorry you are going through this as well. It is terrible. How did you get it, if you don’t mind me asking? What are your symptoms? Thank you again🙏

[2977reader in reply to Bestill]

You’re welcome - it helps to interact with people who are in the same position!

[Bestill in reply to 2977reader]

Yes it does help! I am 47 and I don’t know how it happened but maybe from stress and all that comes with that. My symptoms are rectal pain especially after bowel movements, vulvar burning, groin and inner thigh burning/cold sensation. It’s terrible. What are your symptoms? How did you get it?

[2977reader in reply to Bestill]

Hi, I just read the rest of your message. My consultant, Dr Baranowski, thinks I got PN from sitting constantly in an awkward position! Really aggravating to think I brought it on myself. My worst symptom is a feeling of searing, burning in urethra and / or in inner groin all on right side. Vulva burning at times. And some rectal pain on occasions. Worth seeing a consultant to help with diagnosis if you haven’t already.

[Bestill in reply to 2977reader]

It’s just terrible! Let’s keep each other updated🙂

[kalecolbe12 in reply to Bestill]

I wanted to reply to say i have had pfd with pudental nerve involvement for 10 months and I have been on cyclobenzaprine muscle relaxer for mainly inferior rectal branch of the nerve about 4 months and go to pelvic pt once a week....I started coming off the meds since I felt much better. ..and I had 3 weeks of no pain and then I got a stomach flu or food poisoning I'm not sure and of course I had the runs and the spasming from that started the spasms off again...ugh so I feel that I've been symptom-free before and it can happen again so I'm back on the cyclobenzaprine and I maybe try and gabapentin although I'm nervous about that I may have to my PT said that the two people she has been working on that have tried Botox did not have good results with it....I know a couple of people who have tried cymbalta and it's working well for them the cyclobenzaprine work well for me because it's supposed to stop the spasm... it's really just a lot of trial and error and also home stretches exercisesand breathing... I wish we could form a support group on here because I've already started a local support group where I live and there are four of us in it so far

[Ailiesonkerr in reply to kalecolbe12]

Hi was good to read your recent post. I am finding it so helpful on here reading all this as I have been suffering with pudenal neuropathy for nearly 2 years..... and was beginning to think it was all in my head! I eventually saw a pain management specialist (I went private) and he did an MRI etc., so nothing sinister etc, but they diagnosed Pudenal neuropathy, I have to say I was not convinced, but since being on here and reading everyone's symptoms I am pretty sure that is what it is...… it is just such a weird thing to have in my mind, but think mine has been caused by sitting down at a desk all day and the compression just gives me searing burning pain in my left buttock and inner thigh, honestly by end of the day I was about climbing the walls. I was prescribed Amytriptilline and had to eventualy go up to 40-50 mg. I just did not want to be taking this medication forever more. Therefore I am booked in to have a pudenal nerve block injection next Tuesday, but I am so so nervous about having this done, in case it causes something else, but I think I have to go down the route as a procedure to check it is definitely Pudenal Nerve entrapment. Anyone that can give positive advice with regards to this, would be a great help. I do hope you get relief and good on you for setting up a support group.

[Bestill in reply to kalecolbe12]

Hi there. Thanks for the reply. This is just a terrible way to live life, but we have to take day by day and find something positive about that day. Stay strong and pushing is what I tell myself. I upped my dose of Lyrica to 600mg daily about 3 weeks ago. I also just added Cymbalta at 30 mg. 4 days ago. I’ve read and spoke to 2 different pharmacist that the two together have good pain relief normally. I just stared Robaxin also which is a muscle relaxer last week. We shall see. I was a very active mom and wife before this terror set in. I’m interested in the support group!

[Sturat]

Hi😁 all I can contribute is that I took Cymbalta (similar to lyrica). For 6 months. During the first few months my pain of about ten months faded away. I am not sure if the drug is the reason for that; but it certainly changed the way my nervous system perceived discomfort in that area. I know the drug has powerful effects as it totally removed my ability to have an orgasm. I have ceased the drug for 4 weeks-no rebound pelvic floor aggravation. I know it has powerful effects on the nerves of the area as my sexual ability came back one week after cessation, all I can suggest is persevere with that type of drug.

[Bestill in reply to Sturat]

So thankful for your reply and even more thankful you are feeling much better! I have heard Cymbalta is really good for this type of pain. If you don’t mind, please keep me updated on your progress. Hope is what we need and faith above all!

[Sturat in reply to Bestill]

Regardless of what drugs you are given or what the diagnosis is if your main problem is pain then it helps if you can let go at least as much as you can of the secondary pain. That is the pain a person can inflict on themselves by resisting that internal pain and desperately searching for a solution to it that day.I am a grown up strong man and what helped me the most was when my doctor held my arm and told me “you are not going to die from this”. Without some of the fear and frustration I felt things git better for me. I am sure things will get better for you.🌝

[Bestill in reply to Sturat]

You are so encouraging, and I thank you for that. You’re so right. It’s just so hard to stop thinking and searching. I am going to try hard. 🙂 it’s so amazing you’re feeling better!

[Jenuk32 in reply to Sturat]

Sadly I have had to go onto anti anxiety medication because of this condition I got so fearful and would cry every night of this fear is such a strong thing for your brain and body I hope one day I can come off these but for now it is helping me through the pain as I find my anxiety is now better the pain is more tolerable although I hope one day it will get better or a procedure can be done to ease it.

[Bestill in reply to Jenuk32]

So very happy you’re feeling better. May I ask what medicine and dose you’re doing? This is such a horrible condition and seems to be rare and not many doctors have any help for you.

[kalecolbe12 in reply to Sturat]

I spoke to you a few times in the past but I did want to know how you feel now because last time I spoke with you you were just coming off the cymbalta and we're having severe itching.... I was also wondering if you had rectal pain as one of your symptoms I recently had three weeks pain free and no meds but had a stomach flu and the rectal pain started again with the spasms from loose stools...ugh!!I have been on cyclobenzaprine muscle relaxant which really helped as it is similar in structure to amitriptyline but I am curious about the gabapentin and cymbalta as those deal with the nerves more...i believe Cymbalta is also an antidepressant?

[Sturat in reply to kalecolbe12]

👋 I hope your latest flare up is short. It seems episodes can arise and subside. My symptoms were rectal or levator pain only. They tended to vary in intensity but were pretty much all day every day. When I had a period of probably three weeks of intense nonstop pain I thought I might die (or want to). Normal pain killers didn’t work for me. Cymbalta seemed to initiate a path to improvement. I took it for approx. 5 months and stopped about two months ago as I have been asymtomatic for probably four months. I have feared reoccurrence but it hasn’t happened. The itching subsided and was unrelated. All I know about Cymbalta is that it does effect the nervous system in the respect of perception of pain. I know it has an effect on the pudendal nerve as it killed my sexual function which returned to normal after a week of cessation of the drug. I had no other negative results from it. I did feel more tranquil than usual and it does have antidepressant use. I don’t mind being a little depressed or anxious but I could not stand the constant rectal pain. So now all is good for me. I hope you turn the corner on your problem. Regards Sturat

[Bestill in reply to Sturat]

Hi. I’m so happy to hear that you are still symptom free. I just started Cymbalta 4 days ago along with Lyrica. I’m doing 30mg. What dose of Cymbalta did you take? How did your pain start? Thank you for your input!

[Sturat in reply to Bestill]

Hi 👋 I took 30mg. Cymbalta for 2 weeks to see if I tolerated it then 60mg. My pain started about 8 months before as rectal (or pelvic floor) discomfort . Pelvic physical therapy taught me how to relax the area somewhat but didn’t stop the continual problem. I still am very careful to pursue a high fiber diet. That I think really helps avoid pressure in the area. Best wishes to you.

[Sturat in reply to Bestill]

I may have neglected the question how did the pain start. I really had no identifiable onset. I became aware of the discomfort and thought I had hemorrhoids. As the discomfort became a family thing I went to see a colorectal surgeon. He told me I had a tight pelvic floor muscle-levator ani. My family doctor debunked this. But it seems that diagnosis is probably correct. I did a lot of Ike riding-possible cause.

[Bestill in reply to Sturat]

Thank you for responding! I too think a high fiber diet is very important. Was sitting painful for you and did you use a special cushion? I hope you have a great day. I’m sure the days look brighter for you now🙂

[Sturat in reply to Bestill]

Some misspelling from my previous. Daily thing not family. Bike riding. I actually felt less discomfort sitting than standing. On the worst days I tried to keep walking all day to distract my mind from the pain. I am retired so I had plenty of time to obsess on the discomfort. For me nothing helped and nothing specific caused it. Many years ago I had severe sciatica nerve pain. This was not the same but was similar in that nerve related pain (like toothache). Can be unremitting and torturous. When you have it you have it-when you don’t it is just a bad memory. In all cases I try to stay as physically active as possible. If it doesn’t make it worse I do it. Seems to help . Regards

[Nerve1234 in reply to Sturat]

Hello, I’ve been on duluxotine (Cymbalta) 60mg and Gabapentin 1200mg for about 4 weeks now, no change in pain / burning as of yet I’ve been suffering for about 4 Months ish now. I was told my pelvic floor muscles were extremely tight and won’t relax.. which is whats pushing on my pudendal nerve. I’m also getting sciatic pain in my left bum cheek and down my leg now too.. apparently it’s all connected! I’m going back on Saturday to see my women’s health physio to see if there’s been any relaxation in my pelvic floor since I’ve been doing the exercises and deep breathing. I’ll update you all on Saturday. I’m still struggling to wear trousers / underwear without it causing terrible burning / groin pain. Incredibly distressing, but I’m trying to stay positive!!

[Bestill in reply to Nerve1234]

Hi. Yes please keep us informed. Stay positive and I pray a lot! I would assume the Cymbalta should start working soon. Maybe ask to switch to Lyrica if no change soon. I was having difficulty wearing underwear as well but that has gotten some better since Lyrica. I was on Gabapentin as well but switched. Please give Gabapentin time to work. I think the medicine has to build up. Keep working towards your goal of healing. I also have left sided pain from front to back with leg shock feeling down into my feet.

[nicetry]

Hi Bestill, I have an autoimmune disease that among other things causes intense dryness and pain — everywhere. I’ve had urgency/frequency/pain & my urologist prescribed Elmiron (I don’t know if that’s available outside the US) and last year he used Botox in the bladder wall, pelvic floor and pudendal nerve. In fact I’m having that procedure repeated in January.

[nicetry]

Hi, I suffer from an autoimmune disease that causes secondary illnesses such as overactive bladder & painful intercourse. I take a med called Elmiron (don’t know if that’s just in the US) and cymbalta and have had Botox injections in the pelvic floor and inside the bladder wall. I take fluoxetine for depression. I agree it’s a horrible situation especially since I’m in my early 40s.

[Bestill in reply to nicetry]

It really is horrible. I’m so sorry you are dealing with this too. Is the medicine helping at all?

[nicetry in reply to Bestill]

Yes the Elmiron helps with urgency/frequency and the gabapentin (which was first prescribed by my rheumatologist for nerve pain) helps with pain. But as someone on this thread noted, it can take some time to find the right dose of gabapentin & for it to work.

[UnionJxck]

I first tried Amitripyline went up to 50mg (for over 3 months), it did nothing.

- I'm now on 1800mg of Gabapentin a day now, that get's my mood up, but not effective and easing symptoms really...

- I'm now trying something called DCT for pelvic pain, google it. I think it's good to look at PN as an issue that needs fixing, rather than treating (without surgery)

I've also had a nerve block, it did nothing at all, if anything it made my symptoms worse for a couple weeks.

So far I've had no reduction of symtoms, but it can take months for your muscles to start changing.

Good luck!

[Bestill in reply to UnionJxck]

Hi there! I will definitely look into DCT. Thank you! I hope you start feeling better soon. Give the Gabapentin time to build up in system if possible. I think it’s a really good medicine for this kind of pain for some people.

[UnionJxck in reply to Bestill]

I've been on it for 6 months, it is the best thing I have taken though. For some reason it gives me a real confidence boost. I'm working hard on DCT working out 6 days a week, various stretches, and quite a bit of muscle work in that area, hoping it gets better. My entire pelvic is effected by Pressure, burning, tingling and other weird sensations, First symptom cropped up about 6 years now.

Hoping to get better, I'm only 20 but managing, when it comes to pain I'm pretty good, but it is quite mentally draining at times and is hindering progress with my apprenticeship/love life lol

[Nerve1234 in reply to UnionJxck]

Hello, did you pay for the DCT course , it’s so expensive but I can’t find any of the exercises on line without paying for them I really want to give this a go because my PT has told me to avoid doing strengthening exercises but the video I watched the morning on DCT says otherwise, everything is so contradicting, I don’t know what to do or try anymore I’m suffering so much pain and I don’t know what to do with myself. I have the same symptoms as Bestill

[UnionJxck]

Yes I saved up for it. You also get added to a Forum with 400 other members. The co-creator suffered from PN & had 3 decompression surgery's with no Sucess. DCT is was practically cured him. The founder Nic, also knows his stuff.

[Bestill in reply to UnionJxck]

Would be nice if he offered it for free considering he suffered so much and knows how much others suffer and those may not be able to ever find it in their budget to purchase the video.

[UnionJxck]

I think $260 is completely reasonable, especially if it can help you out of this. You also receive a big amount of support and they do update the program with new stretches etc as well.