Getting anxious...a week til my results come back

Ok so anyone who has been following my story knows over the past month and a half I have been getting various hormone tests done.

I got one result back by chance from the GP and my AMH levels are wayyy too high. They are meant to be 30, mine are 129! Thing is, AMH is driven by other hormones and I am having to wait patiently for next Monday.

The main problem with high AMH usually means PCOS. When I think PCOS I think of an overweight woman with excessive facial and body hair and insulin issues. I am only 50kgs, I'm not hairy at all. My blood sugar levels are good. I have never heard of PCOS being related to V. :l

I am so nervous and scared. If my result is totally unrelated to my V issues I'll be so pissed. It means that I will have 2 problems to contend with instead of 1.....ugh I'm starting to freak out a little.

I just pray I have an answer.... worst part of this shit is getting your hopes up only to be kicked in the guts emotionally when another doctor turns around and says they can't help.

Hi SM,

How did it go?

We all know the gut-wrenching feeling of waiting for test results and the worry it might not lead anywhere. I hope you got some answers or some advice?

xx

Hey Katie May,

Thankyou for your reply. I did get some answers!

A vaginal ultrasound and blood test confirmed I had PCOS. I was shocked, seeing as most women with PCOS are overweight (im only 50kgs!) and usually have facial hair due to excess testosterone. BUT this is where things get tricky...my Testosterone levels are normal. And another big factor.. I have very very low estrogen! And I am not ovulating at all. It is basically like I am mrnopausal the doctor said. (im only 27!). No wonder I feel like shit!Most women with PCOS have high estrogen. The doctor explained to me that there are actually many different forms and causes of PCOS besides the obvious.

And he suspects I have Endometriosis.

So, from here I am having even more blood tests done because my doctor wants to get to the root of the problem as to why my hormones are so f*cked up. He wants to treat the cause, not just mask the symptoms.

And I'm on a 3 month waiting list for him to do a laparoscopy and Hysteroscopy. ..which I am really scared about! He will be doing the op, and looking for and treating any problems, whether it be endometriosis or something else.

So at least I am getting somewhere finally!

How have you been?

Wow, sounds like a pretty tough time, really pleased to hear you are getting down to root causes though and that your doctor is obviously being very thorough. I hope you have someone supporting you at home and who is able to go with you to appointments etc. I'm new here and havent read any of your other posts so am unfamiliar with your history but it sounds like all of us here, a long arduous process, but you ARE getting somewhere and although its a tough road, accurate diagnoses can only be a positive thing!

Good luck with the rest, stay positive! : )

x

• Yes I saw a comment of yours a few days ago on a previous post saying you have been diagnosed after 10 years! I would love to hear your story and a bit more about yourself! How old are you and where are you from?  You must be such a strong person to have lasted 10 years without going insane or killing yourself. Thankyou for your response of concern, it means a lot!
  

I am very lucky, my husband has stood by me through this whole sh*tfight and my mum has been the absolute best, she was the one who did her research and found me my current doctor.


[size=31]I just hope all the problems he has found are what is causing my vulvodynia...I don't know how I will cope if it's not related to everything else.[/size]


[size=33]I have a LOT of fears running through my head but I am trying my very hardest to stay positive. [/size]

I've been considering posting a long-ass history of it all but its a little overwhelming to be honest, I am constantly waiting for referrals and tests, it takes weeks and months to get shit done in the UK. I live in Bristol, UK, I'm 29, I'd like to say I have a supportive partner, truth is they all have been initially but it takes an enormous toll. At least now I can explain to my partner what this condition actually is and show him sites like this so he understands why he is sometimes being rejected. The psychological effects are the hardest to deal with, particualrly when it comes to intimacy. I'm just now realising that the cause of so many problems in previous relationships has been my feelings about my body and intimacy, which I blamed myself for and didnt understad, this diagnosis has been a huge relief but also utterly heartbreaking and I'm just so angry that it went so long undiagnosed and was blatantly made much worse by pumping my full of steroids, anti-fungals and anti-biotics. I used to have a really high sex drive but its just disappearing and its awful. On top of this my partner tried to end his own life a few months ago and is hugely depressed and prone to anger, its a very stressful time, and knowing that stress only exacerbates things, its tough to know what to do. BUT I have just started CBT, cognitive behavioural therapy and am considering sex therapy to, possibly with my partner, possibly alone, just to try and get past some of the anxiety and to break the association between sex and pain.

Phew. Guess I really did need to unload that. Thanks : )

OMG you poor poor thing! Feel free to vent, thats what us ladies on the forum are here for! I can't (well actually I can! ) believe all the sh*t you have had to go through. Can I ask what you officially got diagnosed with? Nerve related vulvodynia or something else? And have they treated you properly? Do you suffer itching or just pain?

It takes months here in Australia too. It freaking sucks! I reckon if I didn't have to wait so long between visits I rould have been sorted out long ago. I am having more hormone tests done and have to wait til early December for results. And on a 3 -6 month wait for surgery.

It totally sucks you haven't had the support you deserve. I get what you mean about it taking its toll, my marriage has suffered immensely, my fault mostly, I was pushing my husband way because I just felt.. wrong. Just all wrong in every way. And I was freaking out obsessing at one stage that he was gonna leave me. But then I realised that if he does leave me, it wouldn't be the end of the world because if he left me over this, a condition that I can not help, he is not worth it. Myself and my health are my first priority. He doesn't fully understand my condition, but he knows how uncomfortable I am 24/7 and knows its not my fault. He has long term health problems of his own so he is a bit more understanding than the average 27 year old male. So sad that your partner tried to end his life, sounds like he needs you as much as you need him. I hope you guys can pull through this difficult time.

I COMPLETELY get what you mean about doing more damage to your body by using the wrong treatment. ..steroids, antifungal ect. I am not using anything except painkillers and antihistamines when my symptoms are unbearable, putting nothing on my skin now and feel a lot better.

The worst thing out of everything for me has been my bosses. They have threatened to fire me for taking time off for doctors ect.my symptoms include uncontrollable vomiting (which they have seen, me throwing up in thee work toilet!) they have tripled my workload and have treated me like shit to the point where I have been hospitalised from illness and the exhaustion and stress. I have a mortgage to pay and my husband doesn't earn good money so I can't afford to not work. I am miserable. I hate my workplace and want another, less stressful job, but noone else would keep me employed because I need time off for doctors and being sick.

I don't visit friends. I don't go out. I save every spare cent I earn because I need money in the bank in case I get fired.

This sh*t totally ruins your life.

It sucks. We are in our 20's and missing out on what is supposed to be the best years of our lives. I feel like it is a long, living nightmare.

Most of us on here would love to hear your full story. I like long stories lol

How did you get onto the right doctor?

Oh sweetheart that sounds awful, having any condition that is difficult to talk about makes working life an utter nightmare, I too have had a lot of time in the last few months for doctors appointments and things and when my boss called me out about it in front of my colleageus I just burst into tears, as I cant tell anyone whats going on, or the amount of stress it causes. I'm so sorry to hear you were hospitalised with stress and exhaustion. What do you do for a living? Are your bosses being any better lately? Do they know about your condition?

Its so great to hear that you have such a supportive partner

I'm right at the begining having just been diagnosed, so am waiting to see my gp and then another specialist in the coming weeks. My diagnosis was vestibulodynia (provoked vulvadynia), its almost always a searing/burning pain after sexual contact/intercourse that lasts for about a week and gradually improves. I have had yeast infections since I was a really young kid. Thing is I still get yeast infections, have had BV recently and also have eczema there. Urgh. It really is a nightmare isnt it?! I know the feeling of just feeling 'wrong' all too well. Unfortunately I just havent understood why, I thought it was all in my head as eczema creams, antifungals and antibiotics all seemed to make it worse but nobody could explain why. I'm currently using a heavy emoilliant every day which is parafin based and I was just recently prescribed upon diagnosis which I thought seemed a little odd but I guess it should prevent further skin damage. Also changed lubricants, tried once, got lydocaine which we havent tried yet, bit scared of putting anything there as you say.

I assume from what you've said that you have vulvadynia rather than vestibulodynia? Do you have pain all the time or just when provoked?

have you tried any diet changes?

I know what you mean about missing out on your 20s, but the way I look at it that only further exacerbates the guilt, shame and depression attached to this condition, if we can get this shit sorted, us and our partners can still enjoy all the good things in life just a little later!

Thanks so much for talking with me, I can feel its helping already. This is really the first conversation I have had with anyone who is not a doctor or my partner : )

Ohhh I can't believe your boss doing that...you must have been so distraught. Im manager of a pharmacy. My bosses are Pharmacists of all things, you would think that working in the health industry they would be a bit more understanding and compassionate. My lady boss knows what's going on, as when all this started I asked her opinion and advice. I told her my most recent diagnosis'es and she was shocked. This time last year she had me in tears, She was threatening to fire me, telling me I needed councilling and that if I couldn't handle the pressure of my workload being tripled while being sick, I should not be working for her. And now there are all these things I have officially been diagnosed with, I hope she feels guilty!!

I have tried many diets...none of which helped at all.

My symptoms are mainly itching all over the vulva, and my vestibules burn. It is all unprovoked and I don't burn all the time...the burning is worse leading up to my period (I rarely have my periods atm). The itch drives me insane. Some days are worse than others. I also have non existant periods and on the rare occasion I do get them they are a nightmare, hair falling out, on and off acne on my face but its always on my back, constant nausea and extreme fatigue, and uncontrollable vomiting, and period pains but no actual period.

I've tried all steriods, both creams and oral form, long term antifungals both cream and oral, all the creams lotions and potions you can think of. Probiotics. Antibiotics. Changed laundry powder, undies, washing with plain water ect. Nothing works.

Been to 14 doctors all up. They all told me it was all in my head and put me on antidepressants - which made me sicker than ever....turns out if you have any hormone problem, antidepressants will make it worse! And told me I needed councilling! No way was I going to councilling. I knew it wasn't in my head.

You are most welcome to talk and vent all you want I am glad it has made you feel better. The stress this shit causes is indescribable. You can't deal with it alone, or you'll end up going insane!!

What is the next step of your diagnosis? Where do you go from here?