Health Organization for Pudendal Education

Hi Janet, Stephanie and Violet, Thank you for all of your responses! I was just working on all of the paperwork to go see Dr. Marvel. I am so torn about whether to pursue this or not. So, I never posted about this here but the original pt I was seeing who diagnosed me had me doing a lot of kegel exercises. This was painful during flares and I read that I should NOT do kegel exercises. She told me that I had to strengthen my muscles in order to relax them and this did not make much sense to me. So I stopped going and decided to try another pt. But I could not get an appointment with this pt for two months and she does not take my insurance. I have an appointment with her in November.

I was reading back over all my old posts (glad I wrote them) and I see a very cyclical pattern where I feel better and then worse. I can also see that I have gotten a lot better from when I started this whole nightmare.

I do still think something is wrong and the medication is just masking the pain. But it's doing a decent job of it. But not decent enough that I feel normal.

But I'm kind of a crossroads about what to do. Do I do nothing and just deal with the current discomfort hoping things will gradually improve? Do I give it another 3 months and reevaluate?

Do I go to the new pt? I didn't feel like pt helped before but this person so local.

Do I go see Dr. Marvel? If I am already on nerve pain medicine, what else can he really do? But I have not seen any doctor who has really understood what happened to me. I would like someone to be able to explain what happened.

I just feel so depressed a lot of the time. I was a healthy woman in my 30s, and overnight I feel like I became an 80 year old. I feel broken.

HI Sarajoy

Could i just point you to another forum where pelvic/vulva pain starting with a UTI is being discussed within the thread which may give you some explanation that you are looking for.
The fact that the Estrace is working for you may mean a hormonal link somewhere.

The website is menopausematters.co.uk - go on the forum there is a thread under personal experiences called Pelvic Pain - i will bump it up for you so that it is near the top.

I have a lot of vulva pain - i have recently enquired about going to France which is a surgery route but like you say that may not be an answer either.

Rosemary X

Hi, Sarajoy, I am on the forum Rosemary mentions. I have been following your posts from day one as I am almost identical to you, mine was caused by an undiagnosed UTI, pelvic floor went into spasm I was told to do pelvic floor exercises which finished the whole thing off. I now no that we have no need to ever do pelvic floor exercise if we walk, stretches exercise etc correctly.

I have also started using local oestrogen after your post, and it has made a defiant difference for the better, I have had my PN pain fro roughly as long as you also, I have been seeing Maria Elliot (UK) who is very PN aware had it herself, I have had no interventions except physio, 20mg ami and local oestrogen, and four months of antibs to get rid of an infection in the bladder wall which was definately playing its part in all this.

Got to go out for lunch with a friend, if I have forgotten to mention anything then ask away.

Thank you so much, Bertie and Rosemary! I am going to check out that link.

Bertie, How did you know there was an infection in your bladder wall? I am not sure what you mean. What is your doctor telling you? Is she saying that you will recover or that this will be something you just have to learn to live with?

Hi. Infection in the bladder wall is different to a general UTI. It means the infection has literally set up home in the bladder wall, and normal urine testing says its all clear when the infection is still in the bladder wall. If you imagine years and years of paint on a door frame, that is what happens with the infection and I wasn't showing classic signs of infection either, I had my bladder scanned and it was very thickened with swelling from the infection and within four weeks it was completely back to normal.

The problem is with the way UTIs are treated is a short dose of antibs, and because most UTIs are e-coli they are resistant to a lot of antibs, and GPs are handing out antibs to a resistant bug without always getting the sample checked they are just going by the dip stick in the surgery, and in the UK trimethapone is a very common antib used for UTIs, but the consultant said I could have been on it forever and it would not of got rid of my UTI.

Look up a Professor Malone-Lee he is UK based but a world leader in how to deal with UTIs, and he deals especially with bladder wall infections, and he is a great beleiver that most pelvic pain starts in the bladder and is undiagnosed, which then causes the other nerves to join in, pelvic floor goes into spasm and it sets off a vicious circle.his treatment is quite controversial as it is long term antibiotic use, constantly switching between antibs so the big doesn't get used to it and learns how to become resistant to it.

I have not been seeing him, but another specialist who goes along the same lines, if I need to go back on antibs I will go and see him though, as his way of testing for a UTI is very different to the standard NHS way. I went to see a pain specialist a couple of weeks ago, who is a specialist in Pelvic Pain, she said it's very important to get on top of any bladder issues and Prof Malone-Lee was the man to see, she also,said this will always be my weakness like hers are migraines .i would say I am 75%better than January 2014 but would like to get rid of the PGAD which joined the party also. I am 48 and the specialist said they see these problems with perimeno/menopause issues.

It is a horrid thing to have this PN, and you can spend so much money and energy trying to find the cure. I have not had any nerve blocks as I know three people who have been made worse by them,and as they are only a temporary sticking plaster I am not going down that road ( but never say never ). I talked to the pain specialist about surgery in France, again (never say never), I am lucky in the fact my children have all left home and I work for myself so can pace myself very well, however sex is off the menu which is very sad, but I have a great husband and we have been together 34 years and as they say in sickness and in health.

Hi Bertie, Thank you for your response. That is very interesting. I looked up Malone Lee and it seems like he? she? might be saying that interstitial cystitis is linked to these infections that are not actually cured. I feel like I had read about that...I have read about EVERYTHING related to pelvic pain over the last year!!!! I did have a resistant UTI and every time the doctors did a dipstick test nothing showed up. But then they would send the urine for a culture and determine that I still had an infection. The really strange thing is that at first I had an e.coli infection but then they thought I had a staph infection and then BACK to an e.coli infection. I was on 4 different kinds of antibiotics in about a 2 1/2 month period.

So, you are saying that you think the infection started up the pain cycle and inflamed the nerve/nerves...my dad is a doctor...and he has thought from the beginning that the problem was probably referred pain from nerves around the bladder. But even he does not really understand exactly why this has happened. Pelvic pain, as you said, all seems to be interrelated.

So, does your doctor think the PGAD is related to the infection and the subsequent pain or completely unrelated to that?

I had something similar to PGAD...a painful sort of arousal feeling that would not go away...but that seemed to resolve for me when I basically stopped sitting for a couple of months. I am back to sitting more now, with my cushion, and I do not seem to have had any bad effects. I am in my late thirties and still seem to have normal cycles.

I read over the forum you posted. Thanks! I am not finished yet.

I agree that this is all horribly frustrating, and doctors seem to know very little! I really cannot fault the doctors I have seen. They have been extremely sympathetic and as helpful as possible. But they just don't seem to understand what is really going on.

One more question...do you think the estrogen is helping you because you are going through menopause? My hormone levels were checked and came back normal. So, I am just not sure why it would help if I am not low in estrogen. I have read something about estrogen helping with pain receptors, but nothing definitive.

Hi. Prof Malone is a he. He does a form of testing called broth testingyour dad may no.his ladies are on antibs for up to two years, constantly changing them as e-coli is a very clever bug, and you keep changing the antib to stop it getting resistant to it. He has not had anyone get C-diff with this regime in twelve years, he was in America resintley lecturing on the subject with others.

Anyway.......he says that a vast majority of unknown origin pelvic pain starts in the bladder, that then gets all the other nerves firing off from that point.......including the PGAD type ones also, as you no the nerves are literally on top of each other, and it then takes ALONG time for everything to calm down once the original infection has gone, and even longer for the pelvic floor to come out of spasm, I used to have a wash board stomach mine is now floppy as holding our stomachs in is the worse thing for us ladies, I also now breath into my stomach not my chest which also helps a lot with the relaxed pelvic floor. My physio had PN caused by a UTI took two years to clear, she also used local oestrogen.

I still have regular periods, but my physio felt I would benefit from local oestrogen, I would bet you are deficient if you are responding to the oestrogen, I am still having regular periods, but from the age of 35 but generally 40 we are in perimenopause wether we have symptons or not, and our oestrogen etc is starting to decline, and the blood tests especially in peri are almost pointless as our hormone levels are changing by the hour, where as when we are through the menopause that is going to give a more accurate reading. If I think back I probably had peri symptons from the age of 40, as sex was just that little bit painful and perhaps if I had started using local oestrogen then things wouldn't have got so bad.

Yesterday in one of our national papers they where talking about the benefits of starting HRT younger, and the survey done in 2002 had floors. Although I still have arousal feelings ugh ugh ugh, it is greatly reduced from taking the antibs, I am contemplating going to France for a diagnosise by the expert if things go backwards again, but if we can sit then we probably shouldn't be having surgery, and as one doctor said to me we want it fixed NOW and go searching everywhere, but nerves are so complicated and there is so much that they still don't no, and this is being told by one of the top uro nerve surgeons in the UK.xx

Hi Everyone, I'm back! Yay....no not really yay. The opposite of yay. So, I had been feeling better. I had a week or two where I felt totally normal. I don't know why. Meanwhile, I made an appointment and saw Dr. Marvel. He was very nice. It was not a big deal, and I probably should have gone earlier. He pretty much confirmed what I already knew. So, I was feeling better and then some of the symptoms returned again. Right now it is burning after I pee. Sometimes its oversensitivity after orgasm, for a few days. I am still MUCH better than when this all started and after I mostly stopped sitting, but I am not normal. And my sex life is in the toilet...obviously. I am pretty depressed. I feel like all of the joy has gone out of my life, and I am paranoid that the really bad feelings are going to come back. Dr. Marvel wanted me to switch from Amitriptyline to Cymbalta because it also helps with anxiety and depression. But I am not sure how to make the switch. And I guess I'm scared the Cymbalta will be awful and I won't be able to get off. I guess I want someone to hold my hand and tell me the right thing to do, but no one is going to do that because nobody really knows the right thing to do. I am also seeing a new physical therapist who I thought understood, but then wanted me to do squats, which I know I am not supposed to do. So now I am not sure whether to think she is helping or hurting me. I am so thankful that I am so much better than I was. But I just want to have my life back and I am really depressed and scared that I am not going to get it back. Okay. Sorry. That was not very cheery. I just needed to get it out.

Hi Sarajoy,
Sorry to hear the joy is slipping away. If you are in Maryland I would highly reccommend Her Health PTs in Columbia. If not the list of PTs off the homepage are those with PN knowledge. I had a similar reaction to the thought of Cymbalta especially as I did not want the fuzzy brain just to combat depression. I lowered pain enough with surgery, PT and acupuncture and taking pain meds as needed and not working more than 6-7 hours a day. I was able to get off the fentanyl patch and thrn lyrica without issues but you never know. Of courses when I was in more pain I was willing to try more. Good luck.
Janet