Mystery Solved….

For so many years I have had a very embarrasing, very painful and very secret problem. It started when I was about 14 or 15. I had these painful lumps and it seemed that my glands were always swollen. I went to the doctor and he suggested the I have them surgically removed. He wasn’t sure what it was but was confident that once it was removed it would be the end of that. Barely a month after the surgery I had another one in another spot.

He did some tests but had no answer. I was put on antibiotics. They just kept on coming back. We eventually moved and once again it as suggested that I have surgery to have the lump removed. Each time I went to the doctor I was poked and prodded and had tests done. Each time it became more painful. I had the surgery but also had blood tests done. The blood tests got lost and I had to do it all over again. The results didn’t show anything that helped and I was just put on antibiotics again.

After many years of tests and surgeries I was told that it came from my nose (not sure how that works) and that I was wheat and lactose intolerant. I was told that I had a problem with my white blood cells. Each time I was put on antibiotics and before I had even finished the course it would be back. After a while I stopped going to the doctor and just dealt with the pain and embarrasment. These lumps started to leave awful scars and in the last few years there has hardly been a day that I have not had a lump of some kind and been in pain.

I was lucky enough that Willie didn’t see the scars and understood when I was in pain. On Monday he suggested I go to our new doctor about this and see if he could shed some light.

I walked in with a lump in full force and by just showing the doctor he knew immediately what it was. I was shocked that he knew exactly what it as and how it felt and what happened. He has decided to put me on quite hectic medication for about 9 months and see how it goes. He told me I had Hidradenitis Suppurativa. I read up about it and ended up feeling quite emotional. After years of not knowing I finally have a name. It as such a great relief knowing what it was and knowing I was not alone. It was such a huge shock to read about it. Even thought I had long ago resigned myself to the fact that I was just going to have to deal with this it was still a shock to know that it might not be curable. It as scary. I am not sure why it is as scary knowing as it was not knowing.

I am also a little angry that there is so little research done about this. There is no known cause for this. There is no known treatment for it. There is very little known about this. I am going to give this treatment the best shot. I know it is going to be a rough few months. It might not be but one way or another I am going to give it my best shot. It is awesome to know that all the pain and embarrasment was not just in my head. That I am not the only one.

2 Comments

  1. Anonymous

    The exact same thing happend to me today – eventually after nearly 15 years of going to one docter after the other and drinking enless antibiotices, I was diagnosed with Hidradenitis Suppuritiva. It is sad that treatment might not work – but I am so glad that 'IT' has a name and that it is nothing I did.

  2. Michelle Roberts

    On one hand I am so happy that you finally know what it is but on the other hand I am sorry that you have it!!!

    I know exactly how you feel though. For so long I thought it was something I did and finally IT had a name. I cried just from being so relieved.

    I must say treatment has made such a huge difference for me. My life has changed. I hope the same happens for you.

    If you want to chat some more or discuss treatments you're welcome to contact me on honeyza@me.com.

    All the best.

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