Vulvodynia after hysterectomy

Is there anyone else here who developed vulvodynia shortly after a vaginal hysterectomy- or any type of hysterectomy?

After my hysterectomy in 1998 I developed some really bothersome symptoms. I had definite symptoms of leaking gas through either the vagina or bladder- like a fistula- not always easy to tell which- at the same time as the rectum. I also developed what feels like a blocked nerve from somewhere in the left vaginal area that radiates pain and a congested feeling all the way down through my left thigh, leg and foot- my foot feels like it is practically asleep most of the time and banging it doesn't help. And then I also developed intermittent bouts of what sounds like vulvodynia. Sometimes there would be a lingering irritated feeling down there, but then out of nowhere that whole area would just heat up and felt like a million degrees. I also found, based on other people's reactions, that a smell would also occur. I wasn't always aware of it but others sure were! And it usually was the worst when I was at work or out and about- less often when I was at home relaxing but it did happen sometimes at those times as well.

Through the years, the extremely hot feeling subsided somewhat, but lately it has re-occurred along with some digestive issues for which I just finished taking antibiotics. The hot feeling is also in what feels like the abdominal cavity so thought it could be diverticulitis but really don't know. And again, I get very negative reactions about a smell when it happens. Once it starts it usually lasts the rest of the workday. Won't know for sure if they have helped because antibiotics of course can cause their own issues like lots of diarrhea and I will be taking probiotics after- I took them during but think it's a waste because I figure the good was just getting killed off with the bad.

Anyway, I never had anything like this before my hysterectomy which only took care of heavy non-stop bleeding but otherwise just gave me a bunch of new problems- including more adhesions which I think was the real source of my pain all along but doctors don't like to deal with adhesions. I feel they definitely interfere with proper circulation which is needed for normal functions as well as healing from things like surgery so I think I probably didn't heal as well as I should have but of course doctors are loathe to admit anything they do to you can have negative effects so it falls on deaf ears. But I can definitely understand why a restriction in circulation could cause something like this- whether it be adhesions or a trapped nerve. But good luck finding help for that- tried physical therapy twice and a chiropractor who suggested a neurologist but have never been referred to one of those and don't think there are many out there in my neck of the woods anyway.

One interesting thing I came upon while researching diverticulitis and fistulas- particularly into the bladder- was that women who have NOT had hysterectomies rarely get fistulas in that area because the uterus separates the bladder from the sigmoid colon where most diverticulitis and fistulas into another organ occur. My thought about the vulvodynia and having had a hysterectomy makes me wonder too if having the sigmoid- especially if you were prone to digestive issues before surgery- now so close to things down there can be a source of this agonizing issue.

There are irritants too, of course. I was even wondering about chlorinated water. Our water smells so strong with bleach lately that I'm thinking of getting a water purifier and re-rinsing undies in the sink after regular washing but have doubts that this will change anything since my issues started post-surgery. And like I've read from so many others with this, doctors always want to blame it on yeast even though I generally have no itching- just a totally searing, burning feeling. I've used so much Monistat per their advice that I'm probably getting irritation from that as well!

Interesting reading the post about irritation from sanitary pads here. I of course no longer need them for monthly periods but I have tried wearing them in hopes of trying to contain the apparent horrible smell I get when the vulvodynia occurs. I don't think they do much good as it is hard to keep them close enough to work but also I now know they could make the burning worse because pretty much all of them have scents involved besides not allowing the skin to breathe.

This dilemma is indeed puzzling and extremely upsetting yet I've never once heard any of my doctors say the word vulvodynia!

Another question. Has anyone had any Bartholin gland issues? I sometimes wonder if that is what is going on on my left side- which 'might' explain the smell and maybe the burning. There is such a swollen feeling in my left pelvic area which may be what is traveling down my leg. It feels so swollen sometimes that I almost feel like that leg is going to become paralyzed. I asked a doctor (not a gynecologist though) and a nurse to take a look but they claimed to have found nothing. I did feel what I thought was a very small cyst but was told there was nothing.

Hey there,

Welcome to this wonderful forum, headed my the amazing Sebby!

I found your story quite complex and interwoven which is normal as per vulvodynia. Have you received a formal diagnosis? Either way, there arent any simple and straightforward answers with this.

Have a look around!

Take care,
noni

Hi and welcome. I'm intrigued by your story actually, fistulas are something they should look for and fix surgically if that's what's going on, have they looked properly and ruled that out? If not they should have! And what kind of smell do you mean? I get that you're saying it's a bad smell but what kind of bad smell is it, what does it smell like? There's a whole host of things in a hysterectomy that could set V off, it's just all happening in that area and nerves, circulation, muscles, fascia are all going to be affected by it. Is your leg numb down the front or elsewhere?

Sorry for bombarding you with questions! I like to puzzle solve if I can!

Hi and welcome!

I should be on my way to work!

Mine started after surgery on my girl bits. I think the nerves get pissed off with the intrusion.

Sorry got to go, if you can find the post I just did for Zazu it says what has worked for me

Good luck
xx.

Sarah,

As for the smell, a lot of times I can't detect it real good myself but when I do it seems to be a digestive kind, although other times I think it seems to be more bitter also. Maybe I'm too preoccupied with the sense of having a fire down there. In any case, it is obvious that when I feel the burn, others notice the odor! And they're not pulling my leg because it happens when I work at different locations, in stores, restaurants, etc. I have heard that sometimes other people know what you smell like better than you do yourself. Other people think it is gas and some just say it is a very strong offensive odor but they don't know exactly what it is. Unfortunately, having odor problems just doesn't seem to be important to doctors and I have read something to that effect but as far as I'm concerned it should be a tool for getting a diagnosis even if they don't give a rat's you-know-what about the severely negative impact it has on a person's life.

The left leg pain seems to run from somewhere in the left pelvis and upper inner thigh, then it feels like it juts out sharply to the outside- on the back of the thigh- then in a bit to behind the knee, and then runs along the outside leg and finally into the foot which always feels like it's half-asleep and this is getting worse lately. A massage therapist I used to go to for visceral manipulation commented more than once about 'That bulge!" somewhere on the back of the thigh/buttock area. I should have asked her to point it out more specifically to me as I can feel the circulatory effects of it but not see it. I wondered also about a possible lipoma somewhere but after pressing around here and there I can't put my finger on anything specific. My family is prone to lipomas. I had a huge one on my upper left chest just inside the shoulder. That thing grew rapidly and I had it removed. But I don't know how or who would diagnose one if it is too buried to find externally. Not sure if any xrays would show abscesses or lumps in the legs or buttocks.

I do have what they call a 'small' rectocele but was told that it wouldn't cause leg pain or any other issues other than evacuation problems.

I have an appointment to see a new gynecologist tomorrow to discuss a 'possible Bartholin's cyst' but after recently seeing a primary doctor and a nurse who both say there is nothing there I have doubts as to whether anything will be done. And as my mother pointed out, they are probably getting suspicious about all of the things I've been in for recently- the possible diverticulitis- which, as I explained in my first post, could possibly lead to digestive fistulas into the pelvic area and I was having unusually bad diarrhea anytime I ate. I have loose stools normally but this wasn't the same. And the heat with the vulvodynia often seems to run from the lower abdomen and into the pelvis.

I also have had a lot of UTIs and yeast infections this whole time- something I rarely if ever got before so we first did a urine culture. So when I went back to talk about the antibiotics for the stomach stuff and then asked about a possible vaginal abscess the doctor seemed kind of tired of hearing about yet another one of my problems and said that that wasn't her area even though she had done some vaginal cyst removal. I had told the primary doctor when I first went in that I had several issues and thought she listened with interest but once the urine culture came back negative she didn't express any interest in pursuing any more of my issues. She just kept telling me to put more Monistat on any red areas which I think I've done enough of! But as I said, they have flared up big-time- probably for the last 2 months and are making going to work extremely unpleasant and difficult.

So now I'm trying to figure out what exactly to say to this gynecologist. It is difficult when you have had so many problems for so long and were never able to get help for them and then they either worsen or you get additional problems. As I mentioned, I believe everything started with adhesions- maybe from a burst ovarian cyst- but nobody would go in and look until 6 years later. Had the adhesions been dealt with I probably never would have had a myomectomy or hysterectomy- fibroids or not. Hysterectomy was recommended often but I was against it and now obviously with good reason!

I also found out that now with electronic records there is no such thing as a true second opinion. Before, they always asked you to bring copies of your medical records and if you hand-carried them you could leave out some of them- like where the doctor was a jerk and gave a worthless opinion without doing anything. Now they pull everything up on a computer and of course are influenced by what the previous doctor said which means you're wasting your time.

I did try to get help for the fistula symptoms shortly after they started back in 1999 but apparently a lot of doctors have never heard of them. They thought the idea of leaking digestive anything through the bladder or vagina was hilarious and one female doc said that even if it was happening, so what? Their attitude was very infuriating and made me feel like a nut-case.

I wish there was one place I could go for all this stuff. I'm the kind of person who prefers not going to doctors so when I do it means I'm really having issues but I don't think that doctors consider this. It is also a pain when you have a job to have to keep going back to the doctor for this and that. I just want someone who can handle several issues and do it promptly. If it were up to me, one test I'd have would be a barium enema, for starters. Or maybe an exploratory but even with the small incisions and scopes they seem very loathe to do that.

I would say when you go see your gyn you need to lay it all on the table and don't be put off or interrupted or dismissed by them. I know it's easier said than done but you need to really stand your ground on this and make sure they listen. Can you change doctors to a new one? I recall trying to get referred for a diagnosis of my Hypermobility Syndrome and the doctors I saw were all like yours and just wouldn't send me anywhere then 6 years later my usual doctor left and I got a new one who amazed me by saying he would send me anywhere I wanted to go within reason until we got a proper diagnosis and months later I did. Not all doctors take what previous ones have said as being airtight, I now see a lovely female doctor and she is working really hard to help me with the pain levels I have from all my issues so sometimes a change of doctor can work wonders.

Make sure when you describe your symptoms that you're very clear too, you seem a bit like me and a bit shy about using exact embarrassing words and if you don't doctors can get away with the misunderstanding card, I tend to psyche myself up in the waiting room to use the words that tell them precisely what's happening even if I'm feeling awkward and embarrassed using them, it works alot better than using words that can be misconstrued. Also doctors now have definitely heard of fistulas, I know a lady who had one fixed back in the 90s but if you had one I would expect your urine sample and any swabs taken from the vagina to contain lots of bacteria from feces as that's essentially what would be seeping through so it's possibly not one.

The other suggestion is if you're clutching at straws about what's wrong don't lead the gyn, don't actually put forward any definite suggestions as then they will only look for that and if a bartholins cyst has been ruled out by other health professionals (to be honest they're usually very easy to spot) it's probably not that so you want the gyn to look and form their own opinion so just give them symptoms but no suggestions of what you think it is. I found this out after years of trying to get help for joint pain and the one occasion I didn't tell a physio what the doctors thought it was they correctly established the problem, it was basically because I didn't influence them in any way and let them decide for themselves from my symptoms and an examination what they thought was happening so if the gyn says anything along the lines of "what do you think it is?" (I've had alot of doctors do this to me over the years because my HMS has a multitude of other symptoms that only seem related once you know what I have) say you don't know and that's why you're there!

You're well within your rights to have some tests done but again don't suggest which ones, only start laying suggestions on the table if the gyn is trying to dismiss you with no answers or tests to check anything. As for the "bulge" on your leg, I would think a massage therapist would be referring to a big knotted lump of tissue as anything else they spot they should advise you to get checked. I personally think the numbness is from tight hip flexors as they cross a nerve that would affect the leg, that nerve also affects the vulva too so seing a physio about that might even get rid of your V too. When any surgery is performed in an area there's going to be a tightening of certain muscles to guard it and the hip flexors sound like the culprit in your case. I'd definitely get that bit checked out by a physio to see if that's the problem there, I'd expect any physio worth their salt to immediately check the hip flexors with the numbness pattern you have.

And lastly, I really wish you good luck at your appointment and hope you finally get a decent doctor who will have a proper look without being influenced by former appointments.

Sarah,

Thanks for your input. Yes, it is difficult knowing what to say and what NOT to say to doctors- it's like you have to be an amateur psychologist! But when they so quickly say 'I can't find anything' then you feel like you have to give an example or two of things that could 'possibly' cause these symptoms. My mother said 'Don't say the word fistula, just say you have air coming out the front. Be brief and simple.'

If it does turn out to be a fistula then of course they would also have to figure out what is causing it. From what I've read, fistulas form from abcesses- and it isn't necesarily a Bartholin's cyst- it could just be from a pocket in the colon. Regardless, this I think would then explain the congested feeling and the possible pressure on the nerves. But I will try to say as little as possible, of course. Like my mother says, if you say too much doctors tune out. They can only think of one thing at a time.

My appointment is coming up in about an hour. I just got home from the dentist where I had a wisdom tooth removed- wasn't planning on that but oh well.

Anyway, I dug out some CT scans from 2005 where they investigated pelvic pain but not necessarily mentioned the fistula. The symptoms wax and wane and I've read that sometimes they can close up but then reopen. Today I noticed a distinct passage of air from the front after going you-know-what. Anyway, on one of the CT photos there is a frontal picture showing the bladder. There is a distinct bulge of what looks like contrast on the left side and the left side of the bladder looks somewhat distorted. It doesn't look like the contrast dripped into the bladder- so maybe the fistula was closed up at that time- but it looks like a little tube jutting into the bladder. I'm going to show this to the new gyn today. I will tell her I know I'm not a radiologist but that little dent of contrast there looks pretty starnge. We'll see! Will let you know what happens. I just hope she does something- every day at work is a nightmare!

Welcome to the forum and please let us know how it went with the gynae

I find if I write things down I can make sense of it all, otherwise I get totally confused

It sounds like you have a bunch of things going on, which maybe linked or maybe not. Thing is as doctors have different areas of speciality you end up having to see a whole heap of them to get each issue investigated! This of course is not always a bad thing as a holistic approach is very much recommended with Vulvodynia.

Persevere with looking for answers and dont be put off by the doctors seeming to want to fob you off, its there job to investigate and diagnose and I think they often forget this

It has been said (by a doctor) that medicine is as much as an art as a science and doctors need to start thinking creatively and look outside the box

Often they just want their patients to tick simple boxes and when they do not, they get irritated.

Good luck and keep us updated

Ok. Back from my appointment.

She said she had the opportunity to work or study under someone who did a lot of surveying of women who had these vulvar irritation issues. Most of the advice on the handout she gave me was pretty much what we've heard. All-white cotton underwear, cotton pajama bottoms, small amounts of detergents free of dyes, enzymes and perfumes for washing clothing. Don't use any soap directly on the area- rinse only. Pat the area dry-don't rub or use a hair dryer set on cool. Soak in a bath with 4 or 5 tablespoons of baking soda or a sitz bath with 1-2 teaspoons baking soda- do 1 to 3 times a day for 10 minutes- this is supposed to soothe vulvar itching and burning and reduce odor. I asked about epsom salts and she said that was not recommended. Don't use baby wipes- which I know a physical therapist DID recommend. Use small amounts of extra virgin olive oil, vegetable oil or zinc oxide ointment. If the ointment has lanolin it might be irritating. I looked for a zinc product but even the ones for babies had fragrance and a whole host of other ingredients so will have to stick with olive oil for now. If you have sex, same thing- olive or vegetable oil and solid oil. It also gave some examples of some name-brand products for laundry and bar soap and pads- it said don't wear pads on a daily basis. They recommend All Free Clear laundry detergent. Dove for Sensitive skin, Basis, Neutrogena, Aveeno or Pears bar soap but don't use on vulvar area. Pad brands were Stayfree, Carefree or 7th Generation. Also Gold Bond or Zeasorb powder to help absorb moisture- don't use powders with cornstarch.

She wants me to try this route for now. However, she did not discount the possibility of a fistula. She said they can be difficult to detect. I know they can tend to start to close up but then come back in full force which is where mine is lately. How bad it smells depends on what is in my colon, I think. There was no vaginal evidence of one but I feel that it is more likely coming from the bladder anyway. She said she'd schedule a CT designed specifically to look for a fistula but not until I try this stuff. The CT photo I gave her to look at did not show the area much. What I thought was a photo of the bladder with a dent was actually the abdomen, she said.

She said I obviously did not have a yeast infection so stop using the Monistat like the other doctor kept insisting I use.

As for the painful left side vaginal bulge, she thought it might be adhesions by the vaginal cuff. This is where the ache starts that sends pain down my thigh to my feet. She had no advice about what to do for these possible adhesions so for now anyway I'll have to deal with the ache and leg pain, I guess. I still think this is affecting the nerves and could be contributing to the generalized burning.

She seemed OK but waiting 3-4 weeks to do anything about the fistula or the leg pain seems like awhile. I would have preferred to have set the wheels in motion for the fistula, at least. She recommended kegels which I've tried in the past with no success- I think when you have pain it makes things worse and besides with all the adhesions I have I don't think I can really change anything anyway. I did not ask about dilators- I have a set but haven't really noticed any improvement when I did use them though never was sure how long or often you should use them.

I forgot to ask her about the possibility of chlorinated water having any effect. At times our water seems to have a strong bleach smell.

That sounds like a very positive appointment actually, you have set things in motion for the scan because she's willing to refer you for one and you've found a doctor who isn't constantly giving you yeast treatments and dismissing you. As far as checking everything out with the scan I think you may well be in safe hands and there's no harm in giving it a while with the other methods to see if that helps at all. The kegels might have made you worse because you can't release the pelvic floor properly, I can't and doing lots of kegels makes me alot worse. They only work if you can fully relax the pelvic floor and as the pelvic floor holds tension if we get anxious etc it makes sense the more we worry about this the tighter it gets. I think you should give yourself a pat on the back for getting the ball rolling and finding a much more interested doctor.

Yes, I agree that it is good that she is willing to consider these things.

My main issue right now though is that left leg. It is sure throbbing and feels so swollen that it wants to explode. I woke up in the middle of the night today from it and heard a lot of fluid rumbling around in my lower extremities. It almost feels like there is now even effects from 'whatever it is' spreading to other parts of my body. Like my right leg and groin even feel like they are starting to swell though no pain. And my left arm is starting to feel weak.

I did just finish taking two powerful antibiotics a few days ago for possible diverticulitis. I took Flagyl and Ciprofloxacn which according to the info that came with them can cause some muscular problems, even after you're done taking them but I don't know. We'll see- but it will be a very long day at work with this pain, swelling and weakness in addition to everything else! It is very strange.

I finally got in to see the gynecologist for my follow-up. I don't have the severe redness and burning that I had 4 weeks ago although from past experience it doesn't mean it can't flare at any time and when it does, it isn't usually possible to see a doctor in a timely manner. I somewhat gave up on some of the home remedy stuff after 2 weeks- I felt that the baking soda sitz baths were actually somewhat irritating and since I'm in menopause that didn't surprise me. I have been using various creams/ointments with varying relief- hydrocortisone, rephresh, pre-seed. Also taking a probiotic called Fem-Dophilus that claims it is specifically designed to repopulate the urogenital area. Besides taking it orally I even mixed some of it with an ointment and put it directly in the vagina which I'd read of other people doing- think I read about it on the Interstitial Cystitis forum. Even when the external burning isn't going on I still feel some internal irritation. Anyway, the gynecologist had said at the first appointment that she'd give me a prescription cream next time if I thought I needed it- she wouldn't say what kind of cream it was. She said today that she wasn't going to give it to me because I had improved but I still think she could have written a prescription and then if I did have a flare-up I could fill it when/if needed. As I said, you can't always get in to see a doctor when you need to the most.

I tried to talk to her about my pelvic pain/spasms and possible pelvic floor problems. I gave the pudendal nerve as an example of a 'possible' cause- not saying that that is my problem, but just as one example of which I know there are many. She did not like that! I couldn't believe what her response was. She said that since I didn't have a uterus anymore that I couldn't have pelvic floor problems! I bit my tongue and didn't mention that men can have pelvic floor problems yet they've NEVER had a uterus! Or that some women developed pelvic floor problems AFTER hysterectomy!

She took on a very defensive tone. She also said that my pelvic floor wasn't tight at all and again said I should do Kegels (which I used to do all the time in the past but the pain/spasms did NOT improve!) I told her I had been to 2 physical therapists in the past few years who said my range of motion and ability to release after a Kegel was poor. She said that, because I didn't experience excruciating pain when she inserted the speculum, like some of her patients did, then I could not have a pelvic floor problem. I told her that no, I did not have pain with speculums or dilators, but that I did have increased pain and spasms for a few days if I ever had an orgasm to which she did not respond. I also told her about the pelvic floor spasms I frequently experience in the mornings- similar to what I've read about such things as Levator ani syndrome and Proctalgia fugax. I'll have a small, somewhat normal bowel movement, then usually from anywhere to 2-30 minutes later, I'll have a violent spasm which results in another, looser BM. I may have this 3-5 times a day- never knowing when I've had the last bout. And of course this does not help any external irriation- whether it is in front or in the back!

She then recommended a gastroenterologist, of which I've seen many of over the years and they are no better. If it isn't cancer, it is IBS, period. They don't know squat about the pudendal nerve, Levator ani, or Proctalgia fugax, etc. and apparently don't want to learn. I also always experienced increased pain/spasms for days or even weeks after being scoped which from what I've read is not normal but again doctors weren't interested in hearing this. I have been bounced back and forth from gynecologists to gastroenterologists more times than I can count in the last 27 years that I have had these spasms. I tell them about this too- how each one keeps sending me to the other but get no response, of course. Doctors are so narrow-minded and lazy when it comes to multiple issues that have 'one' cause but don't fit neatly into 'one' specialty. Will they ever get their fat heads out of the sand and try to thoroughly investigate instead of taking the convenient position of 'it's not my job'? I wish I could get an appointment with a gynecologist and a gastroenterologist at the same time and watch them fight over just whose job it is to help me!

She did not want to talk about the possible tailbone issue that my massage therapist said I should have checked out either. Said I'd have to see my primary doctor about that and of course I don't have a primary doctor because I don't have any luck with them either. I did get an appointment later today with another doctor at the clinic whose specialty is listed under 'Sports', musculoskeletal & spine health although I'm not sure whether he'd know about pelvic pain? He is a Doctor of Osteopathy which doesn't usually mean the same thing in the United States as it does in Europe although with his specialty maybe he's more in tune with the whole body- don't know. I've been to a couple of general practitioners who were D.O.s but didn't feel they were any different from allopathic MDs. He has a history of working on some professional sports teams like for baseball and football. It says he treats 'conditions affecting bones, muscles, joints, nerves & spine', and has 'experience in spine injections, epidural steroid injections, facet injections, hip & sacroiliac joint injections'. I had a plain xray done and my tailbone showed no issues. However, there was one spot of something on the left side that was apparently left from the hysterctomy- he wondered if it was metal - probably because he was going to order an MRI which you can't have if there is any metal inside you- and I said no, not to my knowledge plus I did have an abdominal/pelvic MRI a few years ago with apparently no issues. He didn't know what it was- stitches maybe? I said I'd thought they'd be long gone since the surgery was in 1998 but guess I don't know so it's a mystery. I did tell him I had a history of pelvic pain. He ordered an MRI which I'll have next week. He said it is more likely sciatica and possibly a pinched nerve which could be due to adhesions or something to do with my surgeries. I've had an exploratory, myomectomy, hysterectomy and also right adrenal gland removed due to pheochromocytoma which is a type of tumor that can produce excess adrenaline in extremely stressful situations. They removed the whole gland.

So, we'll see. All I can ask of any doctor is that they at least TRY. He was very professional but don't really know what to expect from a 'Sports' -type doctor as I'm just not familiar with the term. I am glad he mentioned that adhesions could be causing the left side pain because that is a topic most doctors will not discuss either or the most they will say is that adhesions do not cause pain, which I don't agree with. He asked if I'd had any nerve injections though which is something I've always wondered about but have never found anyone who did them. He gave me Naproxen in the meantime as I told him I had difficulty sleeping with the leg pain.

But IMO that gynecologist needs some major re-training. She didn't want to talk about menopause. I didn't even bring up the possible fistula because her attitude was so defensive that I decided I'd fire her! I don't think she would have been open to the issue anymore anyway, despite seeming open to it a month ago. Plus, like the vulvar issues, it tends to come and go and if the testing wasn't done at the right time it'd probably be pointless anyway. Timing would be everything. Still, after seeing that whatever-it-was on the xray today from my hysterectomy, maybe that's the trouble spot as far as the fistula goes?

Hmm a sports type therapist is sometimes a good thing and sometimes not, I've seen a few for my SI joint issues and some have been very brutal with their manipulations because they're used to working on muscly athletes which I'm not but one turned out to be very good at massage if nothing else. You may find he knows alot about the pelvis and can at least tell you if you're out of alignment (can contribute greatly to V) so it may be a good thing. Osteopaths can sometimes be qualified for internal work here, I'm not sure if it's the same in the U.S.

X-rays are notoriously bad for showing any SI or coccyx problems, on my x-rays however I could see I was clearly out of whack as there was a step in the pubic bone so it didn't meet properly but the doctors didn't understand how to read the films for misalignment so ignored it. I also have a black dot near my L5 vertabrae that they can't explain, a neurologist however said he thought it was a big trigger point which may be what you're seeing too.

At least things are still moving and it sounds like you did a good job of standing your ground with the gynae, well done!

I had my follow-up for my spinal MRI this week. The doctor showed me two spots on my left side- somewhere near upper thigh or buttock?- and said that they were irritated nerves. Some of the things he wrote down were LBP (?- maybe left back pain), DDD (?), Stenosis, L SI Radiculitis.

He wants me to go to a clinic that specializes in back and neck pain for 12 weeks of physical therapy- twice a week which sounds like a very long time! I said I'd try it but it will be a hassle with my job- I work out of town some 30 miles away and work at different locations with varying hours. And I always worry that some of these things could make my pain/symptoms worse, at least temporarily which doesn't help when you have a full-time job!

I had problems with the meds he prescribed me this week. He had me on Naproxen, which is pretty much the same thing as Advil or Aleve- think it is Ibuprofen. It is an anti-inflammatory. I reluctantly agreed to try it but remembered trying Ibuprofen back in the 1980s for my pelvic pain. It actually did not help my pain and seemed to make my then-chronic daily diarrhea episodes worse so I never took it again. Well, I'm having the same problem now- I tried the Naproxen over the weekend and it flared my pelvic pain and gave me several episodes of diarrhea so will have to settle for aspirin or Excedrin. I will have to mention this when I go to physical therapy. It has always been a mystery to me why this happens because so many people say it works great for them- especially women who take it for menstrual cramps- yet it has always done the exact opposite for me- I swear, I have a very weird body!

He also prescribed Tramadol which I had heard good things about- including from IBS patients. I ended up having to leave work early a couple of days ago. My head ached and was spinning, I was very nauseous and could have vomited but I resisted because I didn't want to do it while I was at work and then I also had pelvic pain which of course was probably the Naproxen but who knows. Another employee said she had taken Tramadol once and she immediately got sick to her stomach. It was a very harrowing 32-mile drive home from work- I felt like passing out. Nobody at work seemed to give a you-know-what about me- all they cared about was having to work with one less person if I went home. Really, someone- like a supervisor- should have offered to take me to the nearest ER for an anti-dote but nope. I told a couple of them that the reason I didn't go home sooner was because I didn't feel fit to drive but it fell on deaf ears. When I got home I pretty much slept through the rest of the day and night. I'm still tired and have been alternating between feeling chilly and hot but then I never know if it's from the meds or menopause since that worthless gyno wouldn't talk about menopause. And then all the diarrhea I had yesterday and last night probably doesn't help!

I called the doctor and told him about the problem with the Tramadol and he called in a prescription for some Vicodin but not very many. I will try and use it sparingly- I have had it in the past for post-surgery pain and it does seem to take the edge off of the pelvic pain when it is at its worst but since most doctors won't give it to you long-term I have to always make it last when I am lucky enough to get it. I didn't mention the Naproxen issues as I wanted to give it one more try but it is now obvious that I can't take that either.

So we'll see. The physical therapy sounds exhausting- twice a week for 12 weeks sounds like a lot. And it's hard to tell if the leg pain and pelvic pain are from the same thing but I'm hoping it is. I'll reserve judgment on the PT since in the past few years I've gone to a couple of female PTs who specialized in women's issues but they didn't seem to know what to do with me and one of them started blaming me for the lack of success. At least at this clinic there are doctors available and you can have things like injections if deemed necessary although I talked to a co-worker who had some kind of injection for something and she said it did nothing for her but don't know what her issue was.

I really hope your physio goes well, give it a proper shot to work. I can totaly relate to your Tramadol experience, I was prescribed it and it made me really sick and dizzy but more frightening it made me stop breathing in my sleep so I got told to stop taking it before I suffocated in my sleep, scarey. Naproxen doesn't do anything for me either and upsets my stomach so it's trial and error. You should really have been driven home, I don't think there's an antidote as such and it has to be slept off over time but driving on Tramadol when you have a bad reaction isn't a good idea. Hopefully the nerves are related to both problems, it's quite possible they are so keep us updated on your progress.

Just thought I'd update on what I've been doing the past few months.

Not sure if I mentioned that when I saw the sports-type doctor earlier this year, besides finding 2 black dots that apparently indicated inflamed nerves, he also found a fairly large lipoma in my right abdominal wall. He showed me the MRI picture on the screen. I swear, if you didn't know what you were looking at, you would have thought you were looking at a drawing of a whale! The 'head' was up on the right abdomen, probably near the liver, and the 'tail' curved down and inwards into the lower abdomen/pelvic area. This is most likely what started all of my discomfort and issues- I always told doctors that it felt like I had a belt wrapped around my right side and that was where all my pain- including pelvic pain- seemed to stem from for many years since back in 1984. I'm thinking that I probably had the lipoma even before that but maybe when I bent over to pick something off of the flooor, maybe that's when part of it slid downwards into the pelvic area and I had excruciating pelvic pain all of the time as well as what I'd now call frequent episodes of proctalgia fugax. Naturally, after cancer was ruled out, every doctor wanted to call it IBS.

From what I've read, lipomas, just like adhesions, tend to be downplayed by many doctors and considered insignificant. Regardless, I decided to have it removed and fortunately got no argument from the doctor. In fact, it had actually finally gotten to the point where I could see part of it sticking out. I had it removed in July. The lipoma only seemed to show up on the MRI- never on any of ther numerous CTs and ultrasounds I had over the years.

The surgeon said that the lipoma went deep into my abdominal wall muscle. Also said that when such a large thing was removed that the space that was left would be filled with fluid for awhile. I don't know how long it will take for things to straighten out but I still feel that there is a lot of fluid and also still feel the twisted, wrap-around feeling where the lipoma was. So am thinking it could also be awhile before that abdominal wall muscle straightens out as well. That thing has bothered me since 1984 and I also had surgeries so things had to heal around it. I think that the effect of this muscle being pulled sideways messed up my abdominal support and definitely impacted my pelvic floor. My whole pelvic area has felt prolapsed but unfortunately was never obvious to anyone else- be it doctor or physical therapist. They all thought things looked good which of course they would in someone like me who has never been able to have sex or children!

I still have the repulsive discharge (which makes me a total outcast at work- they all assume its a gas problem which in fact I have sometimes but the vaginal odor can be constant!) and burning coming from my left vaginal area. When I recently saw my massage therapist she mentioned some bulging that looked to her like some kind of an abscess. It runs through the very inside of my left inner thigh towards the vagina and then up into my left buttock. Despite that the gynecolgist claimed to find nothing, I still feel that the left vagina bulges in. I still feel the sciatica down the back of that left leg/thigh.

I tried going to a colon/rectal doctor but after a quick wham-bam-thank-you-maam 10 second examination there, he said there was nothing and quickly exited.

Lately I've been trying some sitz baths with witch hazel and tee tree oil but still feel swollen and irritated. The gynecologist that quickly ruled out a Bartholin's abscess said it was probably 'just adhesions'. I'm wondering if adhesions could cause this swelling and discharge but if so there is usually no treatment available for them.

The sports doctor also showed me some very definite stitches on my left side from my hysterectomy 13 years ago. He seemed to think this was not uncommon but I have to wonder if that could be causing any abscess issues as well.

I know this is 2 years too late, but you can go on the pudendalhope.info website and find some answers there. It's not that rare for women to get PN after a hyterectomy. Good luck and get well soon (in case you're not already)

I have had Vulvodynia for 4 years and I do not want to take meds or do surgery.
I found this site that is going to offer a holistic treatment? Im not sure but it looks great.
I added my email, we will see.

vulvodyniapain.com

Im excited, I keep buying expensive compound creams and no luck :(Its hard to put cream down there and for it to stay.