I am stuck, pudendal neuralgia caused... - Pelvic Pain Suppo...

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I am stuck, pudendal neuralgia caused by internal problem

Wewillgetbetter
Wewillgetbetter

I am on here as I am losing hope. This is so so so tiring. I cannot cope and feel suicidal. I am begging doctors for help, they won't listen. I have pudendal neuralgia, I have done pelvic floor physical therapy to no avail. I cannot put pressure on my abdomen and have left sided vulval swelling. I cannot live swollen anymore because its driving me crazy. I need respite, I officially fele like i've lost it mentally.

I went to a private clinic which revealed two pudendal veins in line with my symptom that are not pumping back to the heart properly. I cannot sleep on these veins or put any pressure otherwise i almost faint but the doctor said these are "not significant" on the report and said not accountable for my symptoms. I disputed with him, I said that is in line with my symptoms. He said, the vains aren't that bad for the seriousness your experiencing. I felt physically sick that he said that.

Gynecology have ignored me when i said pudendal neuralgia, and have booked me in for a hysteroscopy. I dont mind having a hysterosocopy but I am going mad i feel so much pressure on my lower abdomen. It literally feels like im sitting on a lump in my belly on the lower left. MRI is clear.

A recent finding of 15 cysts on my right and 10 cysts on my left. My left ovary is excruitatingly painful along with my left swelling. I cannot work out where the source of pain is except the vains which is my gut feeling. Gynacologist tried to label me with pcos, except I have no symptoms of pcos, and my cysts are extremely painful and dragging and stabbing.

I cannot stand, walk or sit because of my abdominal and pudendal pain. My abdomen is putting pressure on my prosterior forchette.

Does anyone have any similar experience?

I feel like I am losing hope of having any quality of life. I am 26, I got ill when I was 21. I feel like they stole my dignity and this is inhumane. I cannot even wear clothes.

56 Replies

I was feeling the same way then I went on gabapentin low dose 300 at night and muscle relaxers low dose during the day doesn't make me sleepy I can work with both of them and it was my lifesaver yes it might not get to the root of the problem but it stopped me from going over the edge and now once you get the pain under control you can start coping with the issues more... You may also want to try hypnotherapy and I'm assuming you tried a lot of different things...you may need an antidepressant where amitriptyline helps both the pain and the depression

Thank you Kalecolbe12. Do you also have swelling then?

I tried Gabapentin...didn't work for me... tried everything. Even Morphine.

Mine is rectal and I had swelling in the anal area... No hemorrhoids no fissure its been all nerve muscle related

Oh, I am glad it's gone down. I have been swollen for four years...I have tried everything to bring it down.. it feels stuck and I can't walk on it... or wear clothes. I am truely feeling helpless.

Thank you for replying though. If you get the chance, did you have swelling for a short period or a long time? I feel like my swelling has become permanent because of how long its been

Have you heard of the Whitely Clinic ?They do special tests to look for varicose veins in the pelvis and can insert coils if you need them .

It is a private clinic .

They have two centres , one in Guildford and one in Central London .

Thank you for your reply dear. I went to the Whitley clinic and they are the ones who dismissed me and my veins. They are the ones who told me about those two veins that are not pumping back properly. So I kind of feel lost as I initially turned to them for help. I would like to solve these painful cysts first though, because its not right.

Oh no!Why could they not do anything for you , like fit coils?

I am so sorry for your suffering. I have damaged pudendal nerves on both sides from a TOT sling. When I was young I suffered from corpus luteum cysts on both ovaries. They were very sharp pains, they filled with fluid and would pop. One time this happened it tore my right ovary in half. I had adenomyosis (similar to endometriosis, but endometrial tissue goes throughout uterus). I know the pain you are describing. I had a hysterectomy at 28, which solved my issues from adenomyosis, but made issues worse with ovaries. They were removed at age 32 and 34. Then the PN damage. I had all the same things, can't wear tight clothing, also difficult to sit and stand. I have found botox shots into the pelvic floor to be a lifesaver for this pain. Excruciating shots, every 3 months. But I got most of my life back. Not all. I understand the depression and I call most doctors idiots! I had one tell me I had internal shingles. His precious mesh could never be the problem. Like you. I cannot tolerate gabapentin. They tried several antidepressants and all had a negative reaction. I found many answers by reading as many medical reports as I could find with my issues. Then I went to the doctor who wrote the report. I have a pudendal interstim that has also helped a lot. Right to the nerve, not the S2 or S4. Dr. Peters, MI, USA, put it in. I sure hope you find a doctor that will listen.

omgsh this is a horror story. I am truely losing hope considering I have had no treatment to date - just getting worse and worse. I have been doing pelvic floor physio by myself but I cannot get rid of the swelling. I cannot get rid of this disease that's plaging my body so badly. I just want to cry when I read your story. All these conditions are so painful and you were so young like myself. I feel like I am going to end up having a hystectomony as well .I feel like by the time I get help they will tell me oh dear its too late.. you now have long term damage. I have very severe ptsd because of medical gaslighting and because of pudendal neuralgia... and being swollen down below on one side has made me loopy. Respectfully. I am trying to find hope but its proving more and more difficult to get help to the point where i feel broken.

Have you had children? My symptoms were much better when pregnant. I had a hard time accepting the hysterectomy, but I had 3 kids under the age of 4 and couldn't be down all the time. The ovary pain is awful! Sharp, hurts to move. Just crazy. I'm glad I had kids when I did. If I had waited it would have been not doable. I had a varicose veins to the uterus, larger than my doctors thumb! Explained the very heavy periods.

You obviously are having an inflammatory response to something?? The swelling has a cause. I bought gel ice pads that have helped. Dr. Hibner's (pudendal neuralgia specialist) told me to get condoms and fill them with a 50/50 alcohol/water solution. Do not overfill. Put them in the freezer. You can insert them in vagina. It helped me a whole lot. Relieved pain well. However, my husband (He is too safety conscious) said he felt they could break and cause more pain. I insisted because of the relief. So he made me "double bag" them. Still worked.

I would like to try this. Thank you for this advice. I haven't had children. I got ill at 21 and I am now 26 and don't see any hope of having kids with this horrendous pain.. I cannot even walk, sit or stand for longer than 2 minutes. I feel debilitated and the swelling like you said is coming from something, but everytime I tell the dcotor this they haven't taken me seriously and I ended up living with a swollen vagina for 4 years! what on earth!

So very sorry for your suffering. It is horrible. My husband told me most doctors are in it for quick patient they can help. Give a pill or something easy. I'm too complicated and they don't want to bother to have to think. If it takes longer than 15 mins, then nevermind. He calls them A+B=C DOCS. If you don't fit into their formula, either nothing is wrong or they push you to someone else. I have traveled all over the USA to get doctors who care. RIDICULOUS!!

Hello I’m hoping you can help me. I’m going for the interstim in like 6 weeks but for my interstitial cystitis but I also have Pudendal neuralgia since I’m 28 I’m now 47. So the doctors and reps are telling me that it’s never been tested for pain but it helps the bladder. On my trial I felt better with the Pudendal nerve but they wanted me to keep the intensity frequency low. I couldn’t understand why when I felt relief from it. So now I’m starting to question the device. Can you tell me what kind of interstim they put in you. And do you see it. My would be right by my coccyx bone which is also making me nervous because I have coccyxdynia too. Thank you for your time. Debb

Also I too had a hysterectomy. Debb.

Hi Deb, I have a metronic interstim. If you did well on the trial that is a great start! Once implanted you control the channels and strength. My leads were put directly to my PN. Sounds like yours is to the S2 or S4. The batteries are now much smaller than they were in 2015 and don't need to be replaced. They are recharged weekly for 30 mins from a belt you wear. I have coccyxdynia too and it isn't affecting that. I wish it would knock out that pain as well! It has been tested for pain, I found the medical report written by Dr. Kenneth Peters online. He describes the trial of putting in 2 leads to see where greater relief was found. One to S2 and the other to the PN. He said every single patient chose the lead going to the PN, so he has skipped the S2/S4 since then. They are not sure how it works, but know it is connected to our brain. The way it was explained to me was it was like a telephone wire keeping the line busy so the pain signal can't get in. He does these for pain, but you have to have a bladder issue before insurance will cover it. So they do not cover it for pain.

Also, forgot to mention, be careful after implant is in for 6 weeks, sit down gingerly, and slowly. I sat on a pillow, but I made the mistake of sitting in a fold out chair, with the pillow and it caused the lead to move. Don't sit, even with a pillow on hard surfaces. For your information. Not trying to be bossy.

Im portuguese and ill write in portuguese. Look in google translator. Ok?

Olá. Vivi sete anos nesse inferno de dores e desespero. Tentei de tudo. Cirurgias, terapias convencionais e não convencionais. Tudo o que possa imaginar!

Fiz centenas de tratamentos (fisio, infiltrações, dry needling, reiki, acupuntura, etc..). Cada vez pior. Em janeiro de 2020 tinha chegado ao fim da linha (death line). Literalmente.

O tratamento que me salvou a vida foi apenas um, com ajuda complementar de outros: tecarterapia. Existem várias marcas desta tecnologia (winback, Pagani, Globus, fisiowarm, etc...). Provavelmente uns serão melhores que outros, não sei. Também não interessa. Compreende?!!

Procure no google um terapeuta, uma clinica, o que for, que tenha isso perto do sitio onde vive e vá!!! Não hesite. Por cada dia que demora, pode ser tarde de mais!

I too am having pain in my left hand side and the doctors diagnosed me with bacteria in my bowel and treated me with a double course of antibiotics which helped and amitriptyline which helped at night with the pain.The pain has returned and they sent me for a scan but couldn't find anything apart from another fibroid which now makes three. They have done various tests which keep coming back with inflammation and l am now waiting on a call from the hospital, next step is camera to see what is going on. When the pain starts it is intense and can last for hours they have now given me another double course of antibiotics and the pain is easing. The doctor thinks l may have diverticulitis but not felt well since Christmas eve. I hope you get some help soon, don't give up persistence is key.

I completely understand your confusion with your bowel and pelvis. Both are a nightmare because they're right next to one another and affect one another. I am glad that they will be putting a camera in you to see what's going on. I hope they find the cause. Keep us updated whenever you can. We are all supporting each other here.

Hi. I have/am having similar issues from endometriosis, they think there is nerve damage. Not sure which nerves are involved but sitting upright, standing, bending is very uncomfortable and painful.

I am taking Tramadol, Paracetamol and Amitriptyline. Then after going to A&E last week I had a call from the pain consultant who added Pregabalin. The combination seems to be helping a bit, and not so much internal shaking and pain. Oramorph is there if I need it

I feel there are still adhesions that weren’t excised last year as well.

What test did they do to find out nerve supply?

Hi Moon_maiden, thank you for getting back to me. This does sound similar to my nerve issue too. It's a nightmare to say the least. They didn't do any nerve tests on me, the neurologist literally just "had a look" and said your pudendal nerve is affected - no reason or cause why. I am confused because my pain comes from the abdomen downwards, and then affects my back. I am struggling to get these cysts sorted out and feel like they are causing a lot of my symptoms.

If you are in the UK, there is an advanced clinic for neurology in Queens Square, you can ask your doctor to refer you there if you feel you are suitable.

Your symptoms do sound like pudendal neuralgia. I could only sit for 15 mins until pain got completely out of control. I was diagnosed with pudendal neuralgia by a imagery guided fluoroscopy to find the PN and then they injected it with corticosteroids. I had 100% pain relief that lasted less than 4 hours. They did this 3 times to confirm diagnosis. I also have obturator neuralgia. All I can say is hang in there! It can get better. I have some good days now where max pain us 2-3. I have bad days as well. Ice helps, but be careful not to use it more than 20 mins, it can burn.

Thank you that’s helpful 🙂. I did ask pain consultant for a nerve block, but was hesitant. I think he’d need to look into that one. I think likely some nerve damage, but desperate to get rid of any adhesions. Gynaecologist has really cheesed me of with their overconfidence

Have they suggested endometriosis in amongst the other things? It effects my kidney area and my hands can shake, but mainly abdomen.

I am under the local pain clinic, I did suggest a nerve block, but he wasn’t sure about that. I’ll revisit that next month.

I went to A&E as I really wanted intravenous painkillers for even a few hours relief but they wouldn’t, they have some diclofenac and Oramorph, stayed overnight for CT scan which showed nothing. I didn’t call 111 last week as the prior week they said to go back to GP. You have to stand your ground if you go.

Do go back to your GP or clinic, you can’t be expected to carry on like that, don’t let them give covid as an excuse.

I am going through a nightmare like yourself. It is just horrendous. I cannot carry on swollen that's the worse bit. Along with the debilitating pain. They did a laporoscopy which revealed nothing. - except a cyst which I believe they said is related to my cycle, but it is causing me pain. And now there are more. The neurologist asked for a nerve block but this was retracted. Ridicolous. Yeah, I am now waiting for the gyneocologist i am under to get back to me.

I am seriously seriously ill.

It’s awful, when they said about cyst, did they call it a chocolate cyst? I’ve read cysts can be awful. Some gynaes will miss endometriosis, it depends on their knowledge.

The pain won’t be in your head, don’t let them tell you otherwise. You have to be your own advocate a lot of the time which makes it even harder.

I made it quite clear last week that this needed to stop. I had hysterectomy last November and thought full endo excision, but only adhesions were removed to get the uterus out, so still suffering.

They tried to say PCOS! But I have no symptoms of pcos - these cysts stab me, I cannot lie on them, I cannot stand because of them. And they just want to say pcos. I am so scared that the gynecologist is not going to listen and I will have to go privately with some kind of huge debt. I am desparate for this pain to be removed.

I am suprised to hear that you removed everything and you still suffered from pain... That's not right... Correct me if I am wrong, they removed the endo and left the uterus?

They definitely need to do something. Ask your GP for a referral to a different gynaecologist for a second opinion.I’ve had everything gynae taken out. I suspect adhesions around the bowel as there wasn’t a colorectal surgeon when there was supposed to be.

2019 I went back to GP many times. An ultrasound in November 19 showed fibroids, the nhs referral went to, in my mind, the wrong area of gynae, so I went private. It was a completely clean slate as I didn’t go through GP. I gave him my notes/ history to read, this was only what I’d written down. He asked a few questions and said endo. I had the choice of going on his NHS list or private. I sold some jewellery to pay for a lap in the end. Endo, more fibroids and enlarged uterus. I moved to NHS as he referred me on to endo specialist.

This is interesting Moon_maiden. Did it treat your pain? Do you still have pn or did you have it with the fibroids/adhesions/endo?

I am so desparate that I am thinking of just booking to remove. I honestly can't cope anymore but money is scarce.

I ended up having a hysterectomy in November with BSGE endo, I’d been told there were delays in having MDT meeting, then get op date, found out recently that they never had meeting so no involvement from either colorectal or urologist. Hence why I’m still having issues. Possibly a bit too soon to tell with Pregabalin yet. If you haven’t tried Amitriptyline or Pregabalin or both it might be worth talking to your GP about it. Amitriptyline I was told can take six weeks to kick in, it’s used more for nerve pain these days, Someone has said 2-4 wks on Pregabalin.

Depending on how you feel about going to A&E, can be worth it to speak to a consultant. But you have to be determined. They were telling me they couldn’t do anything walking through the door 😂 what really upset me, they were still not doing much, was listening to a doctor talking to someone who had gout and saying we’ll keep you in to get pain under control. My getting upset at least caused something to happen, but so frustrating

This is so so wrong on so many levels. I've tried every medication under the sun. I am now looking for a doctor who will take me seriously because I feel like I am dying.

Sorry to hear peoples suffering. I’ve also had pudendal neuralgia for over a year... stuff of nightmares?!!!! In desperation I turned to the medical medium Anthony Williams. He believes it’s the Epstein Barr virus than can cause nerve problems. His recommended diet is helping me as I also had other symptoms related to EBV like thyroid nodules and diverticulosis. He has several books out but start with this one if you’re interested to try and heal through food.

Thank you dear. I am have MM's book at home too. I do follow the MM diet, I only sometimes eat meat and dairy because I don't believe in cutting everything out completely. Have you gone cold turkey? No dairy, no meat, no coffee or tea? No soy too?

I'd be interested to hear.

Also happy to hear that its working for you. Diet truely makes a difference to almost all diseases.

Did your PN go away with this diet?

I’ve only had his book about two weeks so too early to say ( although I’ve been gluten/soy and almost diary free for 6 months.) I follow his list of forbidden foods as strictly as I can, definitely nothing off a pig, definitely no dairy or eggs since reading his book. I try to stick to sardines mainly but do include wild caught fish and a little organic chicken. Since going gluten and dairy free I’ve lost so much weight and now don’t want to lose anymore. My PN has been slowly improving since going totally gluten free so I’m hoping these extra exclusions will chase it away forever!!

Maybe add some therapy with the wand and you might just nail it! I hope you heal. Food is medicine

I only drink herbal tea or lemon water too!

Oh, speaking of lemon water... I think I will have some myself now. Promote some detox

Thanks hope you heal too. I should say I’ve also been having physical therapy with a woman’s health therapist since last May. The emotional support she’s given me has been as important as the physical treatment. PN is vile?!!!

It is so so so vile. That's the word. I honestly can't take it anymore. I am holding by a thin thread and literally screaming of pain because of the swelling. I do not know how to cope.... My diet impacts but not very majorly at the moment. Let me know if you find a huge improvement with the Medical Medium diet so far

Hello my lovely. Have you found the support group for Pudendal Neuralgia and Pelvic Pain on FB ?

Thank you Marion. I haven't but I think I read your story in the newspaper if you are the same Marion and it literally broke my heart. I have swelling on the left and can feel a mass in the left of my abdomen. I think I have something internal contributing to the pudendal nerve but cannot work out what and its driving me insane :(

Hello

I'm sorry, I can't add any knowledge to your problem but just wanted to say, please hang in there.

Eventually you will get to the bottom of your problem - you have to keep asking questions, although it seems wrong that the emphasis is on you.

Another poster mentioned Queens Square: that is the National Hospital for Neurology and Neurosurgery. These are their details:

020 3456 7890

Queen Square , London, WC1N 3BG

uclh.nhs.uk/our-services/ou...

It has a rather long email address!

You could ask for a referral there from your GP or, ring and go privately if you need to.

If you feel desperate and without hope, please do consider ringing the Samaritans. In the UK their number is: 116 123.

Sending a hug to you and hoping you find the cause of your pain. You will.

Rostom

That's it Rostom.. I am trying to get to the bottom of the pain. I know there's a cause and I can pinpoint where it's coming from but I cannot find a doctor who will take me seriously. Not to mention I am running out of mental health fuel, money, and physical energy is very weak due to my illness

I went to them, they dismissed me. Their approach was terrible. Everyone is different but I personally don't recommend going to them for help. They discharged me after diagnosing me with PN, IC and a whole host of other conditions. But not before telling me it wasn't possible for me to have additional diseases (I've since been diagnosed with) by 'looking at me', not by making a scientific diagnosis. I warn people, go, but understand that they don't like a round peg for a square hole. If you don't fit their model they won't treat you and will discharge you. Sad really. I was very hopeful and eager when I first went to them. But, I'm no better than when I started engaging with them and in fact worse.

This is awful. I am sorry to hear that. I know that my pudendal nerve improved with internal pelvic physio therapy using the Thera Wand...except i have swelling so I am limited in how much I can get better with this wand. Have you tried this?

I have swelling too. It's such a mess, isn't it? I truly wish I could offer you more, give you something to hang on to and sink your teeth into. For now, I don't. In future, I might and then I'll share with you. I tend to think there's got to be a way out. And, I believe you'll find it. But, I understand that's not easy to see or feel when in the thick of it. Just know, for what it's worth, there's others out here with you. Stay strong, you'll find a way.

Also, lastly, something that just occurred to me. If you have two pudendal veins that are causing a backflow problem couldn't that actually be irritating the PN? I mean, the vein literally sits next to the PN.

Wow I thought I was the only one! Vulva swelling right? Eugh this is a nightmare. I thought the same but the venous specalist was adamant that this could not be the sole cause of my nightmares. :(:(:(:( THERE HAS GOT TO BE A WAY. I am spending so so much money on alternative treatment that I am seriously broke.

It doesn't have to be the sole cause, but it could be a part of the problem. It's like stacking your medications, right? If you use paracetomol and an NSAID you might get a better result. So, I think sometimes the same thing happens with our health. It's not always one thing, but several and chipping away at each one may give us more relief or better quality of life as we go. Just something to consider is all.

I understand the money aspect too, really I do. Please be kind to yourself this evening. This isn't your fault.

This may be a little off topic for you but Edinburgh University has good information on pelvic pain. Alaine posted it a few years ago so you may not have come across it.

Find it here:ed.ac.uk/centre-reproductiv...

Hope it helps.

Regards

I also had a read of the link, thank you. I do not think pelvic pain with no cause found should be given to a psychologist straight away though. There are always more investigations that can be done and a way to get to the bottom of it, if doctors would just listen...

Hey I suffer from Pudendal neuralgia and have suffered for 10 years now. I also have interstitial cystitis. Have you tried some ice on the area. I use ice constantly to help with the inflammation and burning. Also I recommend seeing a pain management doctor who can do a diagnostic Pudendal nerve block on you. And then follow up with continuing nerve blocks if it works. I go at least once a month. Also. Get to a urogynecologist. They may be able to help you further. I have a great one but she is in Philadelphia. I also have a great gynecologist there. I live in New York and travel 2 hours for these doctors. Also cold sits baths and try coconut oil. But make sure your not allergic to the coconut oil. Aloe Vera pills seen to do something but I don’t know if that’s more for my IC. Look into supplements like turmeric and magnesium citrate. I wish there was more I could say right now to help you. But you really need to make sure you have PN first and I can help out some more. Find a good pain management doctor get Pudendal nerve block for diagnostic purposes and also an MRN to find out what part of the nerve is damage. How did your symptoms start ? I hope that helps. You can private message me too. God bless you Debb

Please let me know how the interstim works for your IC , my daughter has IC too.

Thank you Debra. I don't have PN by itself, I have something contributing to it. I spoke to pain management and she said a nerve block would not be advised because you have abdominal pain contributing to your pn pain. My pain starts on the left and goes down to the left of the vulva where its swollen. There is a lot of pressure in the abdomen, particularly on the left.

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