Hi all.

[Bertie]

This will be long I think!

I am 47 , female in the U.K. My symptoms started about 18 months ago, after I had some uterine polyps removed, after two weeks I noticed it burned to wee various urine samples nothing abnormal. Then summer last year, it felt like I had a tampon stuck, and I had a mild burning sensation about an inch in my vagina on the left hand side. Saw male gynae, he said vaginisms use a dilator, no prolapse. Carried on for a few months, a got referred to a different gynae, she said slight prolapse, cystoscole, rectoecole and cervix, lichen Scerlosis and tight levator ani and vaginal atrophy. Treatment steroid cream lichen, Ovestin cream vaginal atrophy. At this point my symptons where, burning vagina in one persific area inch in left handside where everything radiates from, left pain in and out of clitoris, very sensitive clitoris.

Started using the Ovestin cream, by the sixth day oh my goodness, my vagina and back passage where on fire, this is when everything got worse.

Was given Prozac to take by my GP, four days of Prozac I was so sick and then I started with PGAD, my GP had to stop himself smiling. The mini orgasms lasted for six weeks, especially when walking, calmed down to an on /off feeling of arousel. By this point my symptons are, burning vagina left hand side inch in, vulva,labia,clitoris, back passage,left buttock and left leg down to foot either burning or aching.

I went to see Dr Baronowski PN for U.K, he said there is no definite test but looks like PN. Saw the uro/gynae he works along side six weeks later, she said when PN touched no sign of pain very tight pelvic floor first inch in, had physio with Dr Ruth Lovegrove Jones she said not PN I did not react when touched there, started physio with another physio as the journey to Ruth was to much ( they know each other well ) she has said not PN did not react. When Maria examined me, she said the right handside of my vagina feels supple lubriacted and the first half of the left handside does to, but when you get to the area where the pain is it feels gritty and rough and there is heat where it hurts. There is what looks like a slight abrasion/ sore area it is as if the urethra is rubbing the inside of the vagina wall there. She said the right handside vagina has muscle the left does not.

Test carried out. ......MRI Neurography showed I have many tortuous veins in my uterus as in loads, I also have a profusion at L4,5 the genitalia one, bit of sceliosis and other bits and peices.

Videocystomictogram which shows my bladder and pelvic floor are in good working order. The gynae wants me to have the left Bartholins gland and perineum scanned, as the pain comes from the Bartholins gland.

Dr B said this usually happens for a reason, surgery or trauma. So it is being put down to perimeno and the pelvic floor getting weaker. I was a five times a week horse rider for ten years, had a few falls, but hadn't ridden for 18months prior to this, although when I rode my left foot and bum cheek would quite often get pins and needles.

So my symptoms at the moment are, burning feeling in vagina left handside inch in, aching perineum, burning back passage on and off, left bum cheek aching down left leg to foot, mild PGAD, burning mouth sensation and pain In teeth usually back teeth and the upper set. I can sit without awful pain just burning but choose not to, walking ok but can feel what seems like rubbing in the vagina, when I lie down it feels like sometimes there is a golf ball in my anus/ vagina.

I would say my pain is a average of three, do not leak urine and can hold it without urgency, bowels are fine. Wake in the am 95% pain free. My left bum cheek, does not like me lying on it. So only Dr B says PN, everyone else says not, but I seem to have most symptoms. Thank you for you time.x

[Violet M]

Hi Bertie,

Welcome to the forum.

Maybe you will find this article helpful. http://www.pudendalhope.info/sites/defa ... iteria.pdf Keep in mind this article is discussing whether a person might have pudendal neuralgia that is caused by nerve entrapment. There are other causes of pudendal neuralgia that aren't addressed in the article.

According to the Nantes team, tenderness on palpation is not one of the essential diagnostic criteria for pudendal nerve entrapment. So, I don't know....it seems like Dr. B. could be right based on this article but of course none of us on the forum would be able to say for sure. Do you have any problems with sitting?

So, the male gynae gives you a diagnosis of vaginismus. But the real question is, what is causing the vaginismus? It's not like you've had it all your life so it seems like something must have set it off.

Violet

[Bertie]

Thank you, I have read the article...so much to try and take in. I don't know if he was right with the vaginisms to be honest, as I didn't have trouble with sex or using dilators and the insertion of the speculum at the time.

When Dr B examined ( in January )me and touched the nerve on the left hand side I got a sensation on the left hand side of my clitoris, not pain but a sensation.

The next lady gynae I saw amongst other things said I have tight Levator ani, from the article you sent me and I just read it mentioned that, and I understood it as not the levator ani itself but more than lightly the PN.

Uro/ gynae I saw who works alongside Dr B, said puberrectalsi (sp) muscle very hard almost like wood.

What I find quite worrying at the moment is, I have three experts who are supposed to know a lot about the PN are all saying I don't have it because I didn't react to the touch, although I did with Dr B, but Dr B and the paper I just read said that it is not a definite test anyway.

I also went to see a Dr Goldmeier who is a sexual dysfunction expert, knows a lot about PGAD and he said " that it is almost certain that the PGAD will be caused by PN". He did a sensitive prick test on me, and I was very sensitive on the left hand side from the clitoris, the outer labia down to the vagina. I can trace my pain/sensation from the inch in right up to the clitoris, across perineum into anus, and then left bum cheek down leg to foot, my vagina/ perineum also feels bruised and achy.

When I first had this sitting was very painful/burning vagina/anus, so I avoided it. When I sit now, which I don't very often it is not intolerable, but uncomfortable.

My left bum cheek gets very achy/numb, and when I go to bed it feels like I have a tennis ball in my vagina/anus. Although my bladder is working, when it is full it burns around that whole area.

I also think the rest of my nerves in my body are starting to join in, I feel so frightened with all of this. So if it is Pudendal Neuralgia and not entrapment I assume there is nothing that can be done? I feel like going to Nantes, to see there thoughts as I am not getting any better, and feel like I am going slightly mad. X

[Bertie]

Forgot to mention, my mother also has the same Diagnosis from Dr B of PN, but she does not have the PGAD.

[Violet M]

Bertie, I think it's difficult for providers to make a definite diagnosis of PN entrapment vs. PN without entrapment, so what many patients do is to try conservative treatments like physical therapy and if those don't work, they move on to more invasive treatments like nerve blocks, botox, etc., and as a last resort, surgery. That article I mentioned is just sort of a guide but I don't agree with all of it because I didn't fit the picture exactly, even though I had pudendal nerve entrapment.

The puborectalis is one of the muscles of the levator ani which is made up of several muscles. http://en.wikipedia.org/wiki/Levator_ani
The pudendal nerve runs alongside the levator ani in the alcock's canal and if you have PN it can cause that muscle to be very tense. (That is what happened to me.)

I understand the difficulties of PGAD and am happy to say I am essentially cured of it but I know how dreadful it is. You can read more about PN and PGAD if you go to the homepage at pudendalhope.org and go to newsletters on the left menu and click on the June 2013 newsletter.

Violet

[Cora]

Hi Bertie,
Another doctor who would concur with you regarding PN is Dr. Robert Echenberg. Just thought I'd throw that into the mix.

Cora

[Bertie]

I would love to see Dr Echenberg, but I am from the U.K. He sounds a real old school gentlemen.