Friday, August 30, 2013

Sex & Endometriosis

Sex is something that most people are still shy talking about but for me I have become pretty vocal since my diagnoses of Endometriosis in 2007.

I started to have sex at a young age (too young) I always though sex just hurt in general for everyone, I never would have linked the two together if it hadn't have been for my ongoing research the last 23 yrs.

Sex always hurts for me. Sex to me is the most torturous thing in the world and if I could say "NO" to sex the rest of my life I would. However I am married and you can't really just do that, can you? I am lucky to have a great husband through all of this but how long can someone remain in a relationship when the person has to drink wine to be someone okay to even tolerate the pain? I am only guessing that my husband feels like crap thinking the only time I want sex is when I am drinking and that is far from the truth.

I had a recto-vaginal cyst that went 12 yrs undiagnosed and I knew from my first diagnoses of IBS that they were mistaken and that there was something else seriously wrong. I found at that time it was even more painful.

Deep penetration is a nightmare. There is no position that works at all and we have tried many. The left side of the vaginal wall always seems inflamed and even insertion is painful. How is this fair? I hear about all of these women that have these great sex lives and me, just someone saying "sex" causes me tension and anxiety.

I was at the Endometriosis Symposium in 2011 in Toronto and I met Dr. Wurn from Clear Passage Therapy as he was a guest speaker there. I got to talk one on one with him about pain, sex and Endometriosis. Knowing that I could never afford the therapy there and also that it is in the USA he told me to buy a vibrator. YES you heard me right!! LOL.  He told me not to turn it on and to insert it into the vagina and push against it against the vaginal wall to break up the scar tissue. I found it very amusing an older man sitting on a couch legs in the air mimicking the treatment, I had to actually turn around to make sure no one was looking HA.

I still have yet to try that but will be soon and after going to an Endometriosis support group meeting I have learned of many different things that have been used helped women such as dilators, medicinal marijuana, vaporized weed, pill form marijuana (Marinol) and sex therapy.

So all of these things I plan look into further but I was wondering from all of you what you have tried to make it more tolerable? Did any of you end up finding it was Adenomyosis causing the painful sex?

Let me know I would love to hear from you :)

Wednesday, August 28, 2013

Dealing With Chronic Pain In The Workplace

Picture credit Dr. Seckin

When I look at this picture it brings me back to when I was around 17 yrs old at work lying on the bathroom floor in complete agony. I forgot to take my Advil the night before so the pain could not be controlled to any degree. I found that if I lied down like this with my legs up on my back it helped. So there I was on the cold hard dirty floor at 7:30 with my male manager banging on the door asking me what was going on and I really don't remember what I said but I knew I had to get up and go back to work. I could barely feel my legs because they went numb and the pelvic pain was so strong I wanted to vomit. 

That was 10 yrs before I was to be diagnosed with Stage IV Endometriosis. Once diagnose it all made sense and the surgery was done by an amazing surgeon and I have had great success and am around 75% pain free but that is with the help of the Birth Control Pill I need to take every single day. If I don't the pain returns with vengeance along with hormonal migraines that last around 48-100 hrs. So I take this pill which in turn I have developed many side effects that cause me to have to take time off work. So if I wasn't taking enough time off work this just adds to it along with the Osteoarthritis in my jaw, Chronic Fatigue syndrome and Fibromyalgia. 

So here I am almost 10 yrs with this company and there is no one in Management that I can talk to about this "Gynecological Disease". I have tried to explain it but end up getting so emotional because people just don't care and they certainly don't want to hear about my pelvic pain issues.

 What if  men had a testicular or penile problem? I am sure it would be easy for the men to talk about and it would be understood but the vagina/uterus/ovaries etc? Hey its a good subject to joke about when talking by the water cooler but when it comes to a disease like Endometriosis I am left to feel like this dirty person and this disease is no laughing matter. 

So I go through the motions now as I struggle through strong med side effects like feeling groggy, vertigo, irritable, tired, hormonal, menopausal symptoms, joint and muscle pain and frustrated. Along with the med side effects there are the side effects of surgery from Endo and Endo itself. I have had a total of 3 Pelvic surgeries one being when I was 7 which has caused horrible side effects because of the 3 cm laparotomy scar right above my bowel. So because of these surgeries my SI Joint is stuck and won't move, I have permanent nerve damage in the pelvis and that means I can't sit for a long period of time but guess what? That is most of what I have to do at my job. My right side ends up attacking me by going numb, I lose circulation and there are times where my leg entirely gives out on me because of the sciatic nerve. 

So I go in every day and the stress is so high I want to just walk out and leave because anyone with Endo or any other Chronic disease knows that any increased stress will only cause flares and make the pain worse. 

So what am I supposed to do? I feel so lost and alone there because even if I talk to people about my disease they aren't listening and I get so angry inside. I don't want sympathy all I am asking for is understanding and get that I can't do what other people do but I have been forced to do it and in turn my health is taking the brunt of it. I really feel that I will die before I am 50 because of stress but what can I do? This disease is not taken seriously and it will be a long time before the world knows what it is so in the mean time I have to push as hard as I can possibly push and keep going even when I am seconds away from a nervous breakdown. 

Do you have someone in your workplace that you can talk to about this that understands the needs for appointments and sick days? 

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