The kind of ill that you can’t talk about…

Being a Woman

For many years, in fact since I was 16 years old, I have suffered with multiple conditions and health problems that affected me in lots of different ways. I’m sure I will talk about my other problems later on in this blog including Hashimoto’s disease pernicious anaemia and migraine among others, However the issue that i just can’t talk about, that you really really should talk about is my problems with my lady bits…let’s just say it- my vagina!!

I can’t tell someone I’m not feeling good because I’m in a lot of pain in the downstairs department if you know what I mean. But this is a real problem in my life. I have endometriosis, something that isn’t too hard to speak about, a condition which causes the lining of the uterus to shed into my body as well as with my period. This causes deep internal pain, stabbing and shooting pains and other uncomfortable disturbing feelings. However I also have a problem called vulvodynia. Specifically Vestibulodynia. This problem began just after I met my now husband who has absolutely been the best thing throughout this whole experience. The first time we tried to have sex it was so painful like something was tearing and burning the skin around my vagina. The pain made my eyes water. It isn’t something that anyone should have to go through. It really makes you feel inadequate and as though the man you’re with simply won’t want you.

It has now been almost 5 years. I’m still in a lot of pain and have tried many many treatments. I have been on medications (antidepressants) that are supposed to help the pain and they haven’t. I have tried physiotherapy to no avail, tens machine and biofeedback but all these treatments have just been incredibly painful. I’ve used dilators and have managed to move up in size but still the pain persists and it has no positive effect on trying to have sex. I have also had psychosexual therapy which just made me feel more nuts to be honest!

The good thing in my case was finding my specialist Dr Lewis at St Thomas’s hospital in London. She knew exactly what the problem was, diagnosed me, set me on the path of the various treatmentsnand instantly I didn’t feel like it was all in my mind. It is a genuine problem with the nerve endings and a lot of women go on living with this problem without even knowing what it is. Doctors are so oblivious this problem and it is very hard to get a diagnosis. On my last visit with my specialist she reassured me that 70% of women with this issue do find the pain eventually goes away just as suddenly as it came on, but that it could be years months days-no one knows. It cuts so deep to think that this problem may never go away or take years and years to. I’m a young woman and I want to feel free in my body but unfortunately trying to be intimate with my husband is very difficult and we have to really be careful. Obviously this is no way to have a free and adventurous sex life, but it also really plays havoc with my self esteem and confidence. It makes me feel like I’m not a proper woman and that I just can’t be as good in bed other women who are pain free and able to just enjoy themselves and their partners. Lately a real issue has been my endometriosis pain which has evolved and now causes me pain on arousal meaning that even before we get to touching, I’m already in pain.

I have accepted this issue but do still suffer with down days thinking about it and also find it very difficult to ignore in the bedroom, often welling up and ruining the moment completely. My Husband is lovely and supportive and he has no thoughts or desire for anyone else other than me (proven by the fact that I’ve had this problem since the beginning and he has since proposed and married me!) However I feel guilty and I feel betrayed by my body as well.

I would like to say to any woman that is also suffering with pain and feels like less of a woman, that someone will still love you and that somehow you can learn to accept your problem, do your best to improve it and simply be positive that someday you’ll be free of your pain. I’d also like to say that it is a really shitty thing and you have every right to feel angry and upset!

This post is not meant to bring sympathy for me but to bring more awareness and hopefully allow us to actually feel that we can speak about these problems. It seems embarrassing but at the end of the day it can happen to anyone and is no-fault of your own if you have vulvodynia endometriosis or any number of other health problems. And vulvodynia is just that- a health problem. It is no one’s fault, it isn’t an STD, it’s just bad bad luck and it should be something that we can be open to speak about.

I haven’t given up hope but I do need a pick me up occasionally and other women do too so please just give a nice word to your friends, your colleagues, anyone! Do something to make someone else feel good and you could spare them from having a day of feeling bad about themselves. Women can be cruel but we need to be kind to each other. One kind word could go a long way to helping with someones overall well-being.

My words to you:
You can work around your obstacles. You must not let them make you feel like you are inferior to anyone else. You are a beautiful strong woman and you can deal with anything. You have so much good in your life and one day the things that are bad will not seem so bad anymore. Be strong.


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