Confused and in pain

by Mykah
(Saskatchewan, Canada)

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.



Name: Anonymous

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?

Name: Anonymous

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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Severe Endometriosis Pain
by: Anonymous

Hi all -

I'm 28 and have had endometriosis since I was 16. I suffer from severe pain, especially in the lower back. The pain can be anything from sharp and unbearable to dull, but persistent for days on end. I have not found a pain killer that takes away the pain, but just makes it a tolerable.

The best thing I did was the surgery when I was 21. My doctor also implanted the Mirena and I was pain-free for 3 years! After this time, the endo started creeping it's way back and 7 years later I'm back in excruciating pain.

I'm in the process of re=booking my second surgery. If you're in severe pain, find a good, reputable doctor and get the surgery. It was the best thing I did. If you live in Toronto (or surrounding area), look up Dr. N Leyland.

I know how you feel!
by: Anonymous

I'm 19 too, and have suffered with highly suspected endometriosis for around 4 years now, it started like yours with a severe pain attack which turned out to be a burst ovarian cyst, which they originally thought was appendicitis. I had key hole surgery to see and they found what it was but unfortunately didn't check for endometriosis, just flushed me out and closed me up.

Since then the pain has just got progressively worse. I've been on all pain meds from cocodamol to dihydrocodeine which I'm on now, which doesn't do much at all, I'm also on naproxen too. Nothing seems to work! Have you tried contraception?

Currently I'm on the depo provera injection, only had it 4 weeks and its been 4 weeks of absolute agony, but I'm now taking cerazette along side it, if this doesn't work I'm going to try to mirena coil... just some options for you maybe?

Surgery to remove the endo is my last option really, I have heard from many women that the pain comes back quite rapidly and sometimes worse, something that scares me immensely!

It does sound like you're really struggling with your endometriosis and possible depression, maybe antidepressants are a good idea, but the best option is (like someone else suggested) to find a doctor that you get along well with and like. I can talk to my doctor about how I'm feeling mentally and physically with my endo.

7 months ago she put me on antidepressants because I have a history of depression, which did help slightly and I'm getting some help from a Cognitive Behavioural Therapist after Easter to help me deal with the pain and the depression.
Endometriosis is such a frustrating disease, no one understands it unless they have it, it's hard. Even the doctors don't! But you have to keep pestering them, go to a specialist gynae and get their opinion, find a doctor you like and just keep pushing.

Doctor's rarely ever come to endometriosis as their first option of diagnosis, even when you're certain that's what it is! All you can do is try to stay positive, seek support and use it, and keep pushing those doctors to get what you want!
I wish you all the best darling, I hope this helps even a little bit.

by: Anonymous

I'm suffering pretty similar symptoms,except I've progressively worse over the past 4 years. It used to be just when I was on my period I would suffer from crazy abdominal pain I couldn't bare. But over the past year its become everyday and nearly every symptom I swear I have.

Nausea,fatigue, probably chronic because its every single day all day, dizziness, constant abdominal pain. I have pain in my tail-bone, it feels like Iv'e broken it and always numb. But I'm too sore to not be in bed or sitting down. My back kills me, I can't bend over and when I do and stand up and nearly faint.

I barely eat because my stomach always feels full and its always huge when I flare up. I have no energy ever and its getting ridiculous.

I can't work because I'm so sore all the time and have all these symptoms and then got prescribed medication so I can work - that makes me shake and feel like I'm crazy and I have meltdowns, which have now put me out of work again. I'm pretty much stuck until my referral goes through.

I'm now looking at changing my diet, anyone got insight?

by: Anonymous

I'm not sure if I have endometriosis or not, but I'm terrified it's something worse. A few weeks ago, I had diarrhoea for a week straight. It started in the middle of my period and ended 4 days after it. In between that, I had irregular bowels (some were loose, some were normal, I swear I saw blood occasionally when I wiped.

Sometimes I would get nervous and then have the urge to go which made me think I had IBS). Then, on December 20th, I got my period again. I had diarrhoea on the first day and loose stools occasionally the next day, but it is not out of the ordinary for me to have loose stools during my period.

I also have horrible cramps on the first day of my period that always go away on the second day, not sure if that means anything. Anyway, a few days into my period, I got this pain kind of in my anus, but pretty much just in my buttcrack. The next day, it still hurt there and it was giving me the urge to use the br. I was also getting abdominal cramps all over my abdomen.

I was passing stools frequently and sometimes I felt like I had to but only gas came out. It is December 29 and still happening, and my period ended on the 25. I had a little bit of diarrhoea today.

Aside from that I get pain in my lower back, pelvis/hips, left leg and knee, and the pain in my anus sometimes travels to my vagina. Occasionally I am fatigued, and I'm losing my appetite and feeling full frequently. I'm a 17 year old if that means anything. PLEASE HELP IM DESPERATE

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