These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
My endometriosis story:
I'm a 19 year old female, a daughter of a victim of severe Endometriosis (bounded her reproductive organs, bladder, bowel, pelvic wall, etc.)
I started having what seemed like aching ovulation symptoms (or what I had assumed ovulation pain was) in January '12. By April '12 I was at work when I had to be rushed to the hospital because my right ovary was causing so much agony I couldn't stand, sit, talk, breathe. It was terrifying. I thought I was having a miscarriage or an ectopic pregnancy.
In the ER they ran ultrasounds and of course found a small cyst (1cm) on my right ovary. They assumed I was being melodramatic over period cramps and a teensy cyst, and prescribed me with Naproxen (NSAID's) and about ten Dilaudid 2mg (Hydromorphone) for "pain attacks", as I call them.
I took all my meds and thought maybe the cyst had gone away. Exactly 3 weeks (and a menstrual cycle) later, I had to be rushed to the ER again (THANK GOD I LIVE IN CANADA). My cyst had grown to 3cm, tripling in size in 3 weeks. They gave me more naproxen and this time, Dilaudid 4mg. They told me to stop coming to ER unless I was high fevered or fainting. They booked me a gynaecologist appointment for the end of July. I cried all the way home.
Let me tell you, and I am unashamed to say so, I started smoking certain leafy green plants. By this point, I have taken 8mg of Dilaudid and it has not TOUCHED the pain. I just puke and zomb out. I looked into medical marijuana licenses, and in Canada, it is damn hard to get (purposely, of course).
I ONLY smoke when I would have gone to the hospital. It's not an every day thing. Naproxen does ZILCH for me, except ease bloating and tenderness of my abdomen.
Today is near August '12 and I had my third ultrasound, and my appointment with a gynaecologist. Again, the technicians were very rude to me and, I swear, purposely jammed the internal ultrasound to see if I was lying. They found I have no cysts. She looked for a good 4 minutes and took 5 screenshots. It was like it was my last chance to prove them something's not right, and the cysts just "went away".
My gyno told me I may be experiencing severe menstrual cramping. My gyno told me to take more Naproxen and deal with symptoms. My gyno told me that the only way to see if I have endometriosis is to have a laparoscopy.
I'm sitting at home, in tears, because I truly know what my Mom went through. Everyone thinks you're faking it or being melodramatic. If my Mom and best friend didn't have gynaecological problems too, I think I'd be extremely upset, suicidal, and depressed. If I didn't have her and my mother as a shoulder to lean on, I don't know how I'd go on.
Pain Attack: Any pain that requires me to lay down and not move, and double the pain killer dose. I've figured out they happen on average 4-5 times a month, especially when I'm menstruating.
Ovarian: I describe my symptom as a dull pressure. Almost like someone's inside my ovary blowing it up like a balloon. It is constant, sometimes more painful than other hours/days. It comes rapid though, and lasts anywhere from 10 minutes to a full day.
Uterine: This is the symptom that made me take 8mg of dilaudid. It feels like someone is burning my whole uterus with a torch. It's almost a hot feeling. The dilaudid did nothing. This pain comes in waves and last 30 seconds to a minute.
Joint: My hip and thigh joints/muscles are my only problem right now. It's hard for me to get up and down off the floor, and hard to walk down a flight of stairs.
Intercourse: I haven't had intercourse for longer than 15 minutes since January. Sometimes it's hopeless, but I'm thankful my boyfriend understands.
I GIVE SO MUCH LOVE, WARMTH, AND UNDERSTANDING TO ALL WOMEN WITH GYNAECOLOGICAL DISORDERS, ESPECIALLY SILENT DISORDERS LIKE ENDOMETRIOSIS. I LOVE YOU, AND BE STRONG.
Title: Please don't use weed, it is only putting the problem off
Hi, I had a very similar story to yours at a similar age. My Mum also had worst case of endometriosis her surgeon had seen, fused bladder etc and had to have a hysterectomy at age 40 after years of agony. I had severe pains such as yours and was also admitted to hospital with ridiculous bleeding etc.
I also at around age 20-22 used weed to help and in my experience it is only a short term solution both mentally and physically. You sound like you may be suffering from depression due to the lack of care you are being shown and the amount of pain you are in, together with the unfairness of it all.
I think you should try to find a Dr you like (and trust) and that will listen to you properly, a second opinion if you like? Explain how you are feeling mentally and physically and you may benefit from an anti-depressant rather than self medicating with weed?
On a pain control matter, have you tried taking codeine based meds it or is that what they already gave you?
Title: To original poster
I completely understand what you are going through. I am a 24 year old single mother of twins who are 5 and I deal with chronic pain that is exactly like what you are describing. I have had 3 laparoscopies and still suffer.
I have been on loratad and dilaudid for a year and a half now and have to double up as nothing totally works. The ache in my hips and thighs is so bad and like you said, people who don't have it don't get it.
I just got fired from my job that I had for 5 years because when I would try to explain what I was dealing with they would say 'well you've had surgery you must be better', but I'm not and the docs say the same, 'we got the endometriosis all out this time, there's no way it's in there again'.
The best advice I can give to you is keep complaining to them, keep looking for another doc if one doesn't agree and stay as strong as you can. I wish I didn't have this disease so I could just be normal again, but knowing that there are other women to talk to can help...I wish you the best.
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