Sore perineum and vulvar

[hoopwhirl2007]

I have a pudendal nerve entrapment diagnosis of 8 years now but recently the pain from the anal area has now moved to my vaginal area causing really bad pain in vagina, vulva and perineum. I was given hormone cream to insert by gp as she thought it was menopausal symptoms. This didn't work. I revisited gp and I told her that main soreness was on my perineum. She prescribed me eumovate steroid cream to apply. I applied once and I was in more pain but 1 week later decided to try it once more. I've read that I must give a few days to work. I thought the pud nerve prob in my anal region was bad enough but this pain is on another level. The gp I remember did say that I may have lichen sclerosus but not sure I've read up on this and this could develop into cancer of the vulva. Can anyone tell me if they have had anything like this? I'm going out of my mind. Thanks

[suzie44na]

Hi, I have had pains in this area. I had an MRI scan and I have Tarlov cysts which can cause this pain. Doctors will say Tarlov cysts do not cause pain, but they can. There is only two specialists who deal with them in uk one in London and one in Wales I think. Ask for an MRI scan , just a thought in case you could have these cysts. Hope you can sorted soon.

Suzie

[SouthernSally in reply to suzie44na]

Was it a pelvic MRI or something else? Thanks.

[suzie44na in reply to SouthernSally]

Hi, These cysts are usually found in lower spine, at S2 to S5 area, but I also had two in my lumbar spine too.

Suzie

[SouthernSally in reply to suzie44na]

Thanks. I've had pain a long time with no definitive diagnosis. I had a pelvic MRI earlier this year but I don't know if those areas were covered or even considered, being that a gynecologist ordered it. But I'll look into it. It would be amazing and surreal.

[suzie44na in reply to SouthernSally]

Hi, yes it might of missed your spine. You can ask for a copy of your MRI scan on a disc to look at it yourself, I have copies of mine. I hope you can get a definite diagnosis, hopeless not knowing.

Suzie

[SouthernSally in reply to suzie44na]

Thanks. I can get my MRI on a disc but will have to find an old computer to view it. Maybe a local library has one. There are only a few specialists in the US for Tarlov Cysts, none in my area that I've found so far. I wouldn't mind traveling for treatment but I would like to get the radiology and diagnosis close to home. It seems that even radiologists don't know how to recognize Tarlov Cysts, so there's that. There are so many moving parts and no medical professional to walk you through the path. I'm exhausted.

[suzie44na in reply to SouthernSally]

It bad news isn’t it, anyway best to rule it out maybe. Ask your doctor they might know about your MRI, wishing you luck.

Suzie

[marilwyd in reply to suzie44na]

Interesting informative - I too have Tarlov cysts in my sacrum found by having an MRI.Specialist said they don't cause problems but he is so wrong.I also have pain in the vulva and also they cause sensory burning in both legs.I know what you are going through and it's not nice.

[suzie44na in reply to marilwyd]

Hi, That is true doctors stay they cause no problems but yes they do. The specialists need to change their view on them and help people if possible.

Suzie

[Karenellen]

Internal pelvic floor rehabilitation worked miracles for my long-term pain. No side effects, just takes someone well trained and patience as you go through it.

[SouthernSally]

Sorry I hijacked your post to ask about Tarlov Cysts.From what I've read lichen sclerosis often causes discoloration or patchy skin. I don't recall from your other posts but have you seen a gynecologist? Was the steroid prescribed specifically for that condition or mainly for the soreness?

[Beezwax]

Hi,

I have lichen sclerosus, diagnosed about 4 years ago. Symptoms can vary but you can find images of what it looks like on the internet (white patches, streaks and atrophy). I think the appearance is important in the diagnosis. I went to a sexual health clinic, because I thought I would get a more thorough examination ‘down there’ than from a GP. The clinic was great, got a consultant to take a look and referred me on to a hospital joint dermatology & gynaecology clinic. They were not absolutely sure of the diagnosis because my symptoms weren’t classic but they suspected sufficiently to do a biopsy (was quite scary but not as painful as I’d expected) and it confirmed a diagnosis of lichen sclerosus. I have been having treatment since then, and now have check ups approx every year.

If you get referred to a specialist department for diagnosis it is really important not to use any creams, treatment etc for thrush (yeast infections) for weeks prior to an appointment as these can mask the symptoms of lichen sclerosus.

There can be a higher risk of vulvar cancer but that’s why it’s important to keep having check ups and maintain the treatment.

Good luck.

[hoopwhirl2007 in reply to Beezwax]

Thank you so much for your helpful response. I've really had enough with this and think I will find a private gynecologist to help. Hopefully if nothing gynaecology related I can then see a dermatologist. I'm a pensioner and bit by bit my savings are being swallowed by having to pay for private treatments because NHS waiting list is so long.

[Gongoma]

Yes, but I have no answers. The lichen sclerosis though may be indicated by symptoms around that area on the skin, but I don't think it causes the pain you're describing, I think that's still the nerve issue. Mine, the vaginal and perineal pain, also the avid and from tail bone, comes in what I call attacks that can last a few weeks. Can be triggered by sitting, going to toilet, cold water on my genitals when washing (I don't use toilet paper when going to the toilet, I wash)It's driving me crazy too, and impossible to explain to anyone who hasn't experienced it. The L.S. is just the damn icing on the cake, isn't it? But I wasn't using the hormone cream properly, and through this latest bunch of symptoms and diagnoses, accidental through talking with doctor about other vaginal pain, I realise I should try again with the cream. It won't help the current issues, but might be important in not continuing to develop even more problems. Although I do wonder about the cream and cancer etc. I'm supposed to use the hormone cream a couple of times a week and the cortisone cream. Although I don't see what good the cortisone cream can do long term. I'm thoroughly fed up and then get scared of my thinking about it all and what that can cause. Even lying in bed can start the pain, especially if it touches my tail bone or sacrum. I how you get some answers. What country are you in? I'm usually in Australia but had to come to West Africa to pack up life here, travel is just becoming impossible.

[Kirsihannele in reply to Gongoma]

If you wash every time you go to the toilet it can damage (and later done for a longer period will damage) your natural bacterial flora around the vulva. I wash routinely only once a day in the morning + when I poop (not every day). Use toilet paper when you only pee.

Doctors order cortisone as routine, because they are thought that it helps most often. Stop using it immediately if it hasn't helped by no. It makes skin go thin and get infected easily.

Not a doc, but 70 y of age, 4 y PN, read and studied the issue a LOT.

[Gongoma in reply to Kirsihannele]

Thank you so much. I have hardly used the cortisone, but I agree, I don't see the point of it if it's got bad side effects, or after effects, and it's only helping symptoms. Why use regularly? Anyway, for washing, do you mean with soap or just water? I don't think just putting water there can hurt? I'm not disbelieving you or arguing, I just wonder if you think I'm using soap? Millions of people use water around the world. It's usually in a cup and tipped in with right hand, no soap, but at home I now have what's called here a "Muslim shower". So now I'm scared that water is a problem, and hoping you mean with soap? I hardly ever use soap on my genitals, and when I do, I only use traditional black soap. Please tell me water isn't a problem! I think what is a problem is then not being very dry and I use a small towel to pat dry, but if there's remnant soap and chemicals from washing the towel I can feel it. Even my underpants I can't wash in normal laundry soap and I have to rinse at least 5 times. I'm so sensitive. I easily get little cuts etc.

[Kirsihannele in reply to Gongoma]

If you only use water, it's strange. ALL kinds of chemicals are harmful but as you're so sensitive even the pat drying can irritate. What kind of laundty detergent do you use? Unscented or scented? Do you use fabric softener?

I use organic, colorfree and fragrance-free laundry detergent and NO fabric softener. Liquid detergent rinses better than powder. Like you, I use extra rinses in the washing machine.

I have atopic skin and for decades, I have only taken a shower about every three days. If I shower every day my skin becomes dry like a desert. I only wash my face, armpits, genitals and feet every morning, armpits and legs with gentle, unscented soap. I have even made soap myself to make sure there is absolutely no chemicals in it.

Do you use tight pants or jeans? Are your underwear synthetic? If so, use loose pants and cotton underpants.

Do you sleep in pajamas? You could try to sleep without pants for some time. When I was in hospital after giving birth to my baby, they didn't give me pants and when a nurse saw I had put my pants on, she became angry and told me to take the pants of. When I asked why, she said the vulva heals better when it gets air.

Some people get help from creams ment for dry vulva. I have tried some before I started using vaginal estrogen tablets for menopause. You can buy them over the counter but I would ask the pharmacist, what is good for me? It might help, at least it has helped me and many others. Don't use cortisone, it's harmful.

I hope you get help. I know how horrible this all is.

[Fredna]

You need a biopsy to diagnose Lichen Sclerosus. Docs thought I might have that as well but my biopsy was negative. You should see a urogynecologist to help correctly diagnose PN. My doc started me on Pregabalin first to see if it would help the nerve pain. I was lucky and it helped immensely. I also saw a physical therapist who specializes in pelvic pain. Please check out Pudendalhope.com. Lots of great info there.

[hoopwhirl2007 in reply to Fredna]

Thank you so much doe your great advice. I have a docs appoint on the 15th when I can tell her that steroid cream for vulva and perineum is not helping nor is the estrogen cream helping. I will tell her that I will be seeing gyno/urologist on a private basis.

[Fredna in reply to hoopwhirl2007]

I tried all those creams and more. They really don't help if it is nerve related. I saw many specialists before finally being sent to the urogynecologist that specializes in pelvic pain. Your doc may start with a nerve block first to see if you get pain relief right away. That will help them diagnose if it is the pudendal nerve. Wishing you much luck. Please keep us posted.

[hoopwhirl2007 in reply to Fredna]

Definitely will let you know. Xxx

[hoopwhirl2007 in reply to Fredna]

Went to gp today. She was at a loss. So I have made a private appointment to see gynecologist in worcester on 5 Jan.