What are they missing?

[Nikki1974]

Hi all. Please bear with me, i will try to be as brief as i can without sending you to sleep! I have been suffering with pelvic pain and back pain for nearly 3 years. It all started after i met my now partner. First came the foul discharge, then the pain which i can only describe like labour pains, they were crippling. I had all sti tests completed several times, even went privately to test for ureaplasma and everything was negative but was treated for PID. Pain went for about a month but then it would return and the cycle would continue. As time has gone on my symptoms have grown progressively worse. I can tell when its about to flare up badly, i wake up feeling nauseous, can barely stand i am so dizzy, i have to wear pads as the discharge is so bad, the pain rips through my pelvis and back and sometimes it burns when going to the toilet plus deep horrendous pain during sex. Every single swab/urine culture comes back negative, only once did urine come back with ecoli. Theres always wbc or leucocytes in vaginal culture so theres inflammation somewhere. I had a laparoscopy done which showed an abundance of fluid floating around my pelvis, i was given more antibiotics and sent on my way. I do have adenomyosis but only a tiny patch which doesnt equate to the symptoms im having. The only thing that stops everything including the discharge is metronidazole but within a few days its all back again. For the last year on top of this im also so sore down below, sometimes its red raw and sometimes all looks normal but i cant even go to the toilet as its too painful as it stings so badly or even sit down some days. I believe its related to an infection they are not picking up. If im taking metronidazole every single symptom disappears. Ive been put on hrt even though im 44 to see if its a hormone imbalance causing these issues but its not helping. Im at my wits end. Ive been admitted to hospital twice when this first happened and told its PID but everything is clear - what are they missing? Why havent i been admitted for iv antibiotics? The feelings of despair are overwhelming, its getting to the point i feel so very poorly all the time now and all im being told is i may need a hysterctomy to see if that solves the problem but theres no guarantee! If i didnt have the discharge and the dizziness and nausea when its at its worst i would go some way to accept undiagnosed pelvic pain but i know when sometime is wrong. Any thoughts?

[Debra13]

Hello, years ago I was first diagnosed with something called vulvodynia and vulva vestibulitis. You may want to look up these terms. Some of your symptoms sound very similar and I believe these diagnoses could be caused by recurrent infections. I used to use boric acid suppositories because I was told I had a very bad kind of yeast that doesn’t respond to the medications that would normally be issued for yeast infections. So the doctor put me on boric acid supposition. I think it helped me but I won’t lie to you it’s not that pleasant to use. It doesn’t hurt you though. It is through a prescription and I still use them when I get yeast infections. They do help kill the infection. Just my opinion ok. But definitely look up those diagnoses and try to find a gynecologist that is current with pelvic floor conditions. Where are you located if you don’t mind? Maybe I can help you find a specialist In your area or someone else on this site may be able to after reading this. Hope that helps a little and I’m so sorry you are suffering. Hang in there ok. Deb. 🙏👍🌷

[Nikki1974 in reply to Debra13]

Thank you very much Debra, I appreciate your response and advice and I think you're spot on. I believe the continuous infections have now caused all the irritation. I will certainly look into both those conditions. I have tried boric acid suppositories to no avail, alongside the balance active gels to try to balance any PH which may be off. I also take a very high strength probiotic for female issues but this has not helped either. I've just been diagnosed this morning with a urine infection as I've had burning and passing blood, all tests show lots of pus cells in urine but culture comes back with mixed flora which is suggestive of contamination which happens every time even though I do the whole mid-stream catch. This is why i'm convinced there's a resistant strain of bacteria somewhere vaginally that is crossing over to my urine. I begged my GP to refer me to an infectious disease doctor which they did but it got refused, probably due to the lack of any positive culture. I'm in Hertfordshire in the UK. Thanks Debra - glad to hear you have a treatment that's working for you

[Debra13 in reply to Nikki1974]

Oh my. I’m so sorry. I wish I had a solution for you. Especially when it is infections. It seems something like that there would be a cure for. These damn doctors. Sometimes I think they just don’t really care. They don’t even listen half the time I go to them anymore. ThAnk God I found a good one. Probably one of the only few good ones that’s left out there. I’m sorry but don’t give up and keep pressing on. One of these doctors will help you and I believe you are right. Infections disease is probably the way to go dear. Take care and keep me posted on your status please. I’ll see what I may be able to find out in the states for you. Keep staying strong and don’t give up. Ok. Deb. 👍🤗🙏

[Nikki1974 in reply to Debra13]

Bless you Debra thank you. I saw my urologist last night and told him my situation. He is going to ask my GP for copies of all my tests results (which are normally negative) and forward them onto a microbiologist at his hospital as he believes it could definitely be bacterial infections from the vagina travelling to my bladder rather than UTIs, which is why pus cells are being picked up. He's also going to look into my bladder again for signs of inflammation. If nothing becomes apparent I will ask him to refer me to the infectious disease specialist. So far, this consultant is the only person I feel has a vested interest in trying to help me which in itself makes me feel less alone. I started my antibiotics for what appears to be an infection and although it has cleared the blood this morning, the burning across my vulva is horrific, Im having a hard time just sitting down at work, I have an appointment with my GP today to ask for amitriptyline. Its something that was suggested to me a while ago but I didn't want to take anything to mask what is clearly an infection. However, given the level of discomfort and the psychological impact this is having, I feel I have to try. I appreciate your support Debra, thank you

[Debra13 in reply to Nikki1974]

You are so welcome. I burn everyday in my vagina horrifically and it’s 24 hours a day 7 days a week. Here is what I do for the burning I use coconut oil you can buy it at the supermarket. The hard white kind not the actual oil. The solid I mean. I put it on down there constantly especially after I go to the bathroom and it does help take the edge off. Please try it ok. Get back to me let me know if it helps you ok. God bless you Deb.

[Nikki1974 in reply to Debra13]

So sorry to hear that Debra, I completely sympathise with you. Some days I think I could deal with the pain ripping through my pelvis and back but the burning and itching is what I find the hardest. We are definitely thinking along the same page as I do use the coconut oil, the solidifed type too. Initially, I bought it to use as a lubricant for sex but found it helped a little with the burning too. Are you still trying different treatments yourself?

[Debra13 in reply to Nikki1974]

Absolutely everyday. Read my latest post with the last treatment I had in Philadelphia. You are gonna be surprised ok. I hope you are doing better. God bless Deb👍🙏🤗

[Nikki1974 in reply to Debra13]

Great news Debra, so pleased you are getting some relief. I hope it continues to get better for you x

[Debra13 in reply to Nikki1974]

Thank you. I’m having some difficulty today though. My interstitial cystitis has flared up so I’m in more pain today. I did just go for a nerve block too. Thank you though. Deb

[costagran]

nikki

you say that your problem started when you were with a new partner.

i dont wish to be too personal but just to mention that sometimes sex tends to be a bit wilder with a new beau.is it possible you got a tear .

i've also heard about fluids that are just not compatable.alternatively can you try life without penetration for a while and see how things are.and maybe this would be the best time to ask about a cream containing estrogen.could you have a reaction to the brand of condom or a lube.?

we pray that just one dr would take the trouble to think your plight out. sometimes these clever drs dont see the bloody obvious.

the trypto pills will probably make you feel like a zombie.

and i cant help thinking that you'll need all your wits about you when confronting the medical profession.i really feel for you and hope you do the research and come up with alternate suggestions to present to your drs.

[Nikki1974 in reply to costagran]

Hi Costagran, thank you very much for your reply and advice. I've been placed on HRT to see if hormones are the culprit and also have vagifem to insert twice a week. I've been using the vagifem for well over 4 months now but am not seeing much of a difference unfortunately and am still getting recurrent UTIs. We have tried abstaining from sex for weeks at a time but the problem still persists too, so frustrating. We have tried with condoms and without and nothing makes any difference. I have started the Amytriptyline but as yet am not getting any relief, but using balance active gel with a drop of tea tree oil seems to really soothe things down below which I'm grateful for. I do believe I now have what could be vulvodynia due to infections as its so sore and burny most days, thankfully I'm getting some relief from the tea tree. I was supposed to have my 3-4 month follow-up with my gynae but I haven't received my appointment so need to chase and I will discuss seeing a vulva specialist also. The problem is once you see the gynae, they then book follow up appointments for 4 months away which, when suffering like this, seems like a lifetime away! Appreciate your response Costagran

[costagran in reply to Nikki1974]

i'm wondering if you've made any progress.i looked over your past posts and cant see if you've considered pelvic inflammatory disease.

i have just been d iagnosed with a bacterial infection(again) called gardnella.

it seems to be the one i get.

looking back over the years,just because i was treated for it,doesnt mean i got rid of it..maybe i overlooked getting re-tested to see if i was clear. maybe it came back after the anti biotics left my system.

i dont get discharge or foul smells but i do get a belly ache like period pain all the time.

so this time i,ve been prescribed ovules called cindamicine.

other times i've been given flagyl.

interestingly my gp said dont use soap underneath or the special liquid hygeine product.

sorry i've gone all around the houses but thats what i wanted to point out.

likewise are you using a different soap powder.is your sanitory protection culpable?

what is the boyfriend touching in his job.

i have a friend who's bloke worked in an experimental unit in petrochemicals and she got a fungus inside.

what dr is gonna fathom that out.

when i was 16 my boyfriend and i use to meet at lunchtime from our jobs.he ended up going to the docs with a bad rash on his penis..turns out i had residue from chrysanthemums on my hands.i was a florist. oops.

7 years ago i started with my problem and so many tests later i still havent got an answer.

i've been ready to be offered a hysterectomy for years.

i have a gynno appointment this month and am gonna be more brave and insist on action..

i have the added complication of living in spain and trying to figure out whats being said and reports etc.

i am now convinced i have a pelvic prolapse and if i dont get any joy i will go private.

in the meantime everyone must wrack their brains to get you answers so you can cunningly suggest to your doctors what could be going on.

take care

[Nikki1974 in reply to costagran]

Wow, your story seems similar to mine, sorry to hear youve been struggling for so long, mine has been nearly 3 years so i completely understand your frustration. Mine started with gardenella and i took the metronidazole and clindamycin and then a few months later it seemed to b back although swabs were clear but i ended up with severe pelvic and back pain and went to hospital where they said they believed it to be pelvic inflammatory disease. This happened twice but each time all swabs came back clear. At the same time i got frequent utis, ive had bladder instillations for those which worked while i had them but stopped within a few weeks of treatment and so the pain now continues on a daily basis. Ive now had 2 utis in 3 weeks. They picked up klebisella in my urine and antibiotics work only short term. I have a prolapse of my front wall which im due to have repaired but they wont repair while i have frequent infections - catch 22. I do wonder if the prolapse bears any relation to all these problems but ive been told no by several consultants. Ive chased up my appointment with my gynae as im still waiting 3 months on and no sign of my follow up. Hes keen to give me a hysterectomy but im not as i dont think its the answer. I believe when they are all out of answers they go for the option of hysterectomy! When is your appointment?

[costagran in reply to Nikki1974]

the medical proffession work in mysterious ways here.

i will get a fonecall last minute sometime this month for the gynno.

i waited 2 years for a colonoscope that would include a sedative as i'd experienced the usual proccedure and fought them all off. sadists !

in the end i got sent to a private hospital and slept through the proccedure.

[Debra13 in reply to Nikki1974]

Nikki it’s me Debbie again. I don’t know why I didn’t think of this. You keep getting recurrent UTI’s right. Can you see a uti urogynocologis? Where do you live? I have one in Philadelphia. She is great. I think maybe you need to be tested by a urologist or better yet a urogynocologist. My doctors name is Dr. Echols. I can private message you her number. She is with Thomas Jefferson Hospital. It’s a great hospital. I travel from a suburban in New York to see her in Philadelphia. If you don’t live anywhere near here then please get to a urogynocologist or a urologist ok. I hope this helps. Debbie ♥️

[Debra13 in reply to Debra13]

Nikki. Don’t get that hysterectomy until you get another opinion ok please. Do your research. Ok. I didn’t and wish I did. I had the surgery and it made my PD worse. I found out there was other things I could have done for my fibroids. Deb

[willemine]

Can t help you Compassion but the only advise i have take a second opinion change doctor maybe he or she has other insights