Hi my daughter has been in pain for 4 weeks. First time she passed out and ambulance to hospital and was told period pain. No ultrasound done. We took her to our doctor and they ordered ultrasound, nothing showed up. A week later I took her to the we and they did and ultrasound and said she had mesentery andentitis. A week later she passed out again ambulance to hospital and told again mesentery andentitis. Took her to our doctor who ordered and MRI. The day after the MRI she passed out again, ambulance to the hospital. Hospital look at results from MRI and said she has a 42 x 42 x 44mm hemorrhagic cyst in her left ovary which is pushing her uterus to the right. ( the right side is where she has pain. They think that she has had other cyst that burst and this is causing low blood pressure this is why she is passing out. The hospital have sent her back to our doctor to refer to a gynaecologist. How dangerouse are these cyst? Would it have grown this big in 8 days as it never showed up on the ultrasound befor having the MRI? I am so furious with the hospital for just telling her it was period pain.
I am sorry...What a nightmare. I wish I could say this was rare, but unfortunately it is not. I can't tell you how many trips I've had to the ER since I was 19 and was told it was nothing. Maybe a cyst bursting, or just bad period pain. I was not diagnosed with stage 4 endo until I was 29. That was 10 years of pain and suffering and misdiagnoses. You have to be a strong advocate for your daughter (sounds like you are up for the job) What you need is a good endo doctor. I mean a doctor who specializes in endometriosis.
Endo can only be diagnosed through laproscopic surgery. You need a doctor who does excision surgery. Most docs will cauterize it which does not get rid of the disease and can cause painful scarring and infertility. There are many websites that can point you in the right direction.
Endometriopolus.com will show all the best surgeons in North America.
The sooner you can get a good doc and a diagnosis the better.
If she has large blood filled cysts then the disease can be advancing quickly.
There is a long time member on here named Ticked who advises people about the best doctors. She is very connected in the community and I am sure she will get back to you with some info.
Be prepared to fight for good care because these 'women's issues' are not very prioritized, especially in an ER setting.
I wish you and your daughter all the best and hopefully you will get some support and answers soon.
Hi thanks for commenting. We have a gyno appt on Thursday. I hope this is not just an American forum because I'm from australia. Hopefully the gyno can do something. The pain is constant. She has missed so much school and is just not my funny/cranky daughter anymore. She has never taken so many pain killers before and now has been on them for 4 weeks. The doc prescribed her ponstan. Is there anything else you would recommend cause it is starting to wear off and not help with the pain. Thanks once again
Unfortunately it is so true that this is not uncommon.. too was stage 4 when diagnosed but I was 38 by then...they then did a hysterectomy and removed my ovaries, but I continued to have pain...because they removed my female organs but did not remove all the disease so it continued to wreak havoc in my pelvis! Unfortunately because I had been castrated (this was in 2004) no one believed it could be endo ~ I was dismissed, treated like a headcase as well as a drug seeker...all not true...finally in 2011 I found an endometriosis specialist who went in to look around and just like my first surgery the endo had glued my organs together (frozen pelvis) even after removal of all my female parts...my colon had attached to the side of my body...it was a mess in there...I have now had excision surgery two times by two different surgeons and hope like crazy the endo journey is done...although the damage it has left behind will never be better...but it is what it is...I would suggest seeing an endometriosis specialist for the best chance at eradication of the disease without taking organs that should not be taken! I am sorry your daughter has to be an endo survivor! It's a tough road, but with a loving Mom like you she will get to a better place!
I am Canadian and we have many members from all over the world. The endometrioplolus site has doctors across the globe. It is the best way to find a good endo doctor.
Also joining the World Endometriosis forum on Facebook will help you connect.
Let us know how it goes with the gyno (:
So confused and scared. Gyno said its strang that the cyst and other stuff didn't show up on the ultrasound but has now shown up on MRI. She said the cyst isn't acting with her hormones/period so has now ordered hormone and cancer blood test.
Don't worry about the cancer-
they have to test.
It is HIGHLY unlikely at her age so don't go there okay?
This is very typical because most doctors don't understand endometriosis AT ALL.
It rarely shows on an ultrasound. I have stage 4 worst case scenario endo and NOTHING has ever showed on an ultrasound. My surgeon saw a mass on my last transvaginal ultrasound but that is different.
Have you looked up endo doctors?
I feel that you will probably get jerked around a lot with regular gynos, so I'd get a referral to a specialist ASAP.
Hang in there...
We have been to the gyno and she wants to do a lap. Just trying to get the money together to do this. Nearly $10,000 and we don't have private health. Also got a letter from the hospital about my complaint they are satisfied that she was given the treatment needed. What a croc. So angry at them. This could of been over with but no they didn't want to investigate, just said period pain and have endon. This afternoon she had a gush of blood, anyone know that this might be? Thanks
I would suggest doing some crowdfunding to raise some money. I did this recently to help with the travel expenses I have going to another city for surgery. You can set up a free profile fundraiser for your daughter at youcaring.com. You can share it on Facebook, Twitter, and via email. I would suggest joining the World Endometriosis Forum on Facebook as well and posting it there. You may not make the full 10 grand but every little bit helps. It is worth it to get the best care possible.
As for the gush of blood-
I bleed like a faucet turned on high every 2 weeks for 5-7 days. I pass clots the size of my fist. It is normal for endo. Make sure that you are getting her iron levels checked and her red blood cell count. Anemia adds to the misery of this disease.
Feel free to PM me if you have any more questions.
Let me know where you are in austraila as I have a lot of Endo connections out there and I can steer you in the right direction.
An Endometrioma is an indicator of moderate to severe Endometriosis. So the disease most likely is in other places other than just the ovary. You want someone that can Excise the disease which cuts it out from the root so that it doesn't grow back. If done by a specialist in this disease she has an 80% chance of pain relief.
I am not sure if you mentioned her age but the older she gets the deeper the Endo could go and you don't want that as I am a product of a failed medical system.
Thanks all for your advice. We are in brisbane and she is 15. Still has pain and bleeding with gushes and clots at the moment. I just feel bad for her as all I can do is give her pain killers. It upsets me as she has never taken pain killers like this for so long. Never been in hospital ever and now misses school and work. I just hope we are heading in the right direction.
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