my story and I still need help!!

I'm only 17 and I have been with my boyfriend for 3 years. I have been living with several different problems and unable to have sex for nearly 2 and a half years (the majority of my relationship). I met my boyfriend when I was 14 (I know really young) My mum wanted me on contraception and I had to go on the implant as I suffer with migraines with aura. I was fine for 3 months until I started bleeding all the time and getting cystitis all the time. The doctors were just giving me more and more hormones to stop the bleeding but nothing would work. I started to have a real problem with having sex and with my bladder. I had a constant burning pain and found it hard to urinate with out pain and my bladder would only hold 10-30ml (suppose to hold 300ml comfortably). The doctors finally took my implant out after a year of having it (September 2012, age 15) and was put on the progesterone only injection in the October to stop my bleeding (I never bled while on the injection) I still had all my problems while on the injection. I was finally referred to the hospital to see a bladder specialist (June/July 2013 age 16). I was diagnosed with bladder pain syndrome and bladder pain which I now take solifenacin and amitriptyline for. I thought my constant burning pain and pain during sex would subside along with the bladder problems but it hasn't. I also stopped taking the contraceptive injection because I thought it was down to hormones. I was referred to a gynaecologist who told me I had vaginismus without even examining me and prescribed my dilators... at this point I was willing to try anything... I became so down and it had start to take its tol on my relationship me and my boyfriend had split up last year in the October... I wasn't coping with anything at this point and went back to my bladder doctor(she was lovely) and she examined me and said my skin looked raw and prescribed me a steroid cream which I had a really bad reaction to over Christmas (was back with my boyfriend at this point) I had severe thrush and swelling so I went to the nhs who were really concerned that I was using a steroid cream for a skin condition that hasn't been diagnosed. They then examined me and said I need to come back and see there Doctor. I went and saw the doctor who diagnosed me with vulvodynia but said there isn't anything she can do for me and that I need to get my thoughts in my head to match the thoughts in my vagina, basically telling me its all in my head. I burst into tears when I left the room. I went back to see the gynaecologist at the hospital who felt sorry for me and said it does sound like vulvodynia but she also thought it could have been down to hormones too as it takes a year for the injection to wear off. She prescribed me lidocaine gel, which to begin with really helped, I had good times and bad, sometimes it hurt more than others and there has been some weekends that it hasn't hurt at all. I noticed sometimes I felt like I had a deep bruising pain. (I thought this could be my injection wearing off) I'm starting to have periods again but they are all over the place. I saw the gynaecologist again a couple of weeks ago and she did a scan and blood tests and everything is normal... I was hoping for them to find something!!! So now I feel like I am stuck and I just don't know what I can do. MY cycle is all over the place and even using the lidocaine my burning pain is still there pretty much all of the time, my body just randomly decides when it doesn't want to hurt (very rare) please someone help or give some advice?????

Hey babe,

I so feel for you, being so young. I'm only 26 and I know how you feel, it frigging sucks!! My problem started when I came off the Pill a year ago. I have seen various doctors and specialists with no success. I have been doing my own research because my periods are all over the place and apparantly a basic blood test will not really show a hormone imbalance. Apparantly you need to do a 24 hour hormone urine test and a saliva test. And get a blood test every week to show what is going on with your cycle.

I am due to see another specialist in a few weeks and will be questioning this....if i have no success I think I will try a naturopath.

It's so hard! I joined this thing because I didn't know what else to do! I think I've been trying to put it down to something else! I had blood tests and a scan done a couple weeks ago and nothing was found! I was hoping to find an imbalance in my hormones and everything was fine! But because of what you just said about the bloods I wonder if my hormones would have shown up.... Hmmm!!! I have my good days and my bad days!! I keep a little diary of what my body is doing and I'm going to show it to my doctor when I next see her!! Let me know how you get on? Xx

Has anyone mentioned Endometriosis to you? Has anyone ever tested you for it? Endometriosis can cause bladder problems as well as bad periods ect. It's just a thought.

Have you had an ultrasound of your pelvis and kidneys?

My problem is chronic itching and inflammation and occasional burning, accompanied with extreme nausea and fatigue and vomiting on an everyday basis.

I will be drilling the gyno I see in a few weeks about hormones ect. As I said before, if this gyno has no answers I will see a naturopath.

Yea one of my fiends has it and she had all the same problems and was on the same contraception as me so it did cross my mind, but I had a scan of my pelvis and kidneys a couple of weeks ago and everything was normal!!!

And oh my I feel for you! That sounds horrible! Have the doctors said it's vulvodynia?

They say the only real way to identify and diagnose endometriosis is via laparoscopy. (Unsure of how you spell that!)
Have you asked your specialist about it? Next time you see a gyno ask them about it.

It is great that you are keeping a diary, I have started doing the same for the last month. I am writing my symptoms throughout the day, when I get my period and the food I eat in a day. I have already been food allergy tested with no result but it cant hurt to record it....I don't see how pricking my skin and applying a food substance has anything to do with how my digestive system works!

The doctors dont think I have vulvodynia as I am mainly itchy. And do not have any pain during sex or by touch.

Have you seen a Uregynocoligist?

See I have never had a proper internal examination! Only had a doctor look if that makes sense? I've never thought of endometriosis because I've never had pelvic pain all the time and my periods are irregular because of contraception!! I might suggest it though when I next see her!!

It's defo a good idea to keep a diary because you can see what your body is doing as you'll be surprised what you forget!

What's a uregynocologist?

The only way to know if you have endometriosis is thru surgery.  Scans will not show endo.  So if they said no endo for that, find a different doctor.

Endometriosis has never been mentioned for me, only vulvodynia and vaginismus has been mentioned and obvious my over active bladder and bladder pain syndrome, I might see if she will look into it more because if you ready diary it's all a bit weird

The periods being all over the place sound like endo.  And you can def get vaginal pain from endo.  I have both endo and vulvodynia (although the vulvodynia is "cured"). I sometimes STILL get pain/pressure in my hooha but it is COMPLETELY different than vulvodynia pain.

I think the periods are my injection wearing off as they are starting to regulate (touch wood) how did you get rid of your vulvodynia?

Surgery... A vestibulectomy, but you have to jump thru a ton of hoops in order to get it done.  And it's only really successful if you have localized provoked vulvodynia. I would honestly go to a specialist and have someone examine you properly.  Meaning a proper pelvic exam.  My doctor took 3 hours with me the first time I went to him.

What's that? I've been refered to the hospital for a year and been diagnosed with my bladder conditions and the vulvodynia and they've prescribed me lidocaine but it's not really working... And what's that? Is that when it's always there? I've only decided to start looking into it because I didn't want to accept it is what she was saying it is I wanted it to be hormones or something!!! I've only had an altra sound and them just look, is it worth getting a proper examination? The gynaecologist I see never want to listen to what I have to say to be honest!! She only decided to do a scan and blood tests because I wouldn't shut up

I would never go to a doc that didn't do a proper exam.  They're only guessing at what could be and not what is.

I feel that's what my gynae has done she told me I had vaginismus with out even looking at me, even though my my burning pain is constantly there and it's around the outside and entrance of my moo moo and nothing to do with my muscles inside! She only said it was vulvodynia when the NHS told me it vulvodynia! Where was your pain if you don't mind me asking?

where are you from? Yeah I would hope someone would look before spouting off with a diagnosis! It's possible to have both tho- I did.

My pain was at the entrance so I couldn't have sex because I couldn't get past that point

Devon, you? Exacly!! My bladder doctor was annoyed that she didn't look but she thought I had a skin condition so I've been prescribed so many things that have made it worse

I live in Florida.  Yeah that'll happen its kind of experimenting with different things until something works... unfortunately

See the thing is, I know this sounds stupid but all the stuff I have read, like peoples conditions being looked into more/ being cured it's always been in America... So I'm not to sure if it's that known in the uk, and my gynae doesn't seem to think that she thinks I just have to stick at what she is telling me too... So I'm hoping she will consider other options when I see her!!

Bring it up with her! cant help it not come to Florida and see my doc jk! Seriously though, every doc has their own bag of tricks so if she isn't working for you can you see someone else?  I have no idea how the health care works there...

I'm going to, I have taken so many notes from this site.. So glad I joined it's making me feel so hopeful!!! And ahahaha I wish!! Everything seems to be better over there... And it's all free on the NHS over here so they basically don't give a crap unless I go private... But at the age of 17 I don't know how I'll afford it... I'm not to sure if there is other gynaes I can see on the NHS though... I'm getting so confused with this vulvodynia/vestiblodyania I don't know what the different is?

A GP once told me that if a Gyno does not do a proper internsl examination, they arn't a very good doctor!

A Uregynocoligist is a Gyno that also specialises in disorders of the bladder as well as the vagina.

If I were you I'd be doing my research on Gyno's in your area and seeking a second opinion!

What is a proper internal examination though? And I think thinks that's what I'm going to do if I don't get anywhere when I next see her! She doesn't seem interested at all!!!

A proper internal examination is where the doctor puts on gloves and inserts a few fingers into your vagina with one hand, and feels around your internal organs, while with the other hand they will feel the outside area like your pelvis and stomach.

A good doctor will explain the process at they do it.

Do your research of specialists in your area. Look for a Gyno/Urogyno that has lots of experience.

It doesn't sound like she has any interest in helping you at all. It is ridiculous. I thought it was bad for me being in my 20's, but you are only 17 and the doctors arn't even taking you seriously either.

Do you have a family member or a good friend who is supporting you through all this? I'm so lucky to have my mum and my best friend who have both gone through their own vaginal problems.

My gp did that but it took all but 5 minutes but my gynae never did, she told me I had vaginismus with out examining me and the dialators she gave me was making it worse as I was stretching sore skin on the outside!!! And when I went back to see her she did th cotton bud test but never examined me properly... I think I'm going to, where are you from? And have you found any results??

I know considering I have had this problem since I was 14 they didn't seem at all concerned...which is a bit odd I thought I was to young to have any of these issues but obviously not!!!

And yea my mum and my boyfriend are really supportive of me and my boyfriends mum is amazing with me as she has had so many problems but even with support it's so hard to stay positive!!