I feel like no one understands or listens...

[Natalie9786]

I'm sure everyone in this group can relate and I'm really hoping to just talk to people who have gone through what I have. I'm so frustrated and simply just exhausted. I've always had irregular periods and cramps to the point of passing out. I've had multiple ER visits for extreme pelvic pain and ultrasounds done that showed nothing but small cysts and even after the point of them rupturing on their own the pain continued. This has been going on for years. Between the ER my family Dr and two different obgyns....no one would listen to me and all they did was switch my birth control and prescribe me to Vicodin (which I hate taking and also fear of getting hooked unintentionally). FINALLY after years of this off and on again my family Dr said she thinks it could be endometriosis OR IBS which the only symptom I have of IBS is bloating. They are ordering another ultrasound and referring me to an endometriosis specialist...if I have endometriosis what does this mean for me and the future of my health..im only 25. Someone please talk to me about this. It's been such a long road and I know I still have a long road ahead..i could really use some support!

[Elly0102]

Hey! I'm so sorry that you have to deal with this. I'm coming to learn with endometriosis that this is a common story. I started to experience crippling pain a year ago and as soon as it began I went to my GP. My GP told me I was normal and sent me off. I then suffered in silence for a few months and went back and she then sent me for an ultrasound which didn't pick anything up because they generally don't with endo. 8 months had passed and I ended up in the emergency room one night in excruciating pain - where again all the doctors said they couldn't do anything. I had researched my symptoms myself and was 99% certain that I had endo but at the same time had convinced myself i had made it all up. I then went to a different doctor as a last resort and pretty much demanded to be sent to an endo specialist and 4 weeks later had a laparascopic procedure that diagnosed me with Stage 3 Endo (there are 4 stages). The earlier you get onto this and demand to be taken seriously the better. There are some serious long term effects including infertility and links to other immune conditions such as chronic fatigue. I don't say this to scare you as every endo patient has their own experience however, that's the reality sometimes of Endo. During surgery I also had an IUD put in called a Mirena which doesn't contain oestrogen as a form of birth control. Oestrogen dominance has been linked to being a major contributor to endo and Oestrogen dominance can be exacerbated by the food we eat and chemical we expose ourselves to such as that in skincare and cleaning products. Ive tried to eat a largely organic and clean diet post surgery in order to try and avoid this factor. I have come across so many people post-surgery that have explained their situations to me and have said they too have not been taken seriously even by female family members. I have tried to have a voice for these people in hope that is we create an awareness surrounding endo we can prevent some of the more painful long term effects (my poor boyfriend gets to hear all about it and is now a pretty strong advocate himself) Good luck with your journey and i hope everything resolves for you xx

[kait37]

Hi Natalie,
I am 25 also. Been fighting endro for years longer than it was diagnosed. Similar to what you said, I was going to the doctor often about horrible cramps (even throwing up) and my doctor did nothing. (Also in and out of the ER) years later I moved and the first doctor I saw did a vaginal ultrasound and saw cysts and endro (I believe to be 100%sure they have to open you up)
I have stage four endro, when that doc saw me she scheduled a surgery. Ended up having to go to a bigger city cause they didn't feel comfortable operating on a case that advanced. I had it not only in my pelvic area but stomach all over inside. (Laparoscopic surgery, I have five small scars on my stomach, very small scars. Was four at first then second surg they made another opening)
Anywho can go on for days!!! Endro *****! And IBS! Recently they thought I had colitis too, did tons of stuff changed my diet then once I saw a specialist found out luckily I don't. Had to do these breath tests to see if I was intolerant of anything. Just sent them in, waiting on results.
Again could go on and on about endro, it is a fight!!! But already making you read a book lol. Any questions I would be more than willing to share. Treatments they've tried etc.

[Natalie9786]

Thanks for your response. I'm sorry to hear all you have been through with this disease it sounds horrible. I hope things are getting better for you. I finally got an appointment in a few weeks for a consultation with the endo specialist...is there anything I should know in advance and be prepared for? I don't really know the proper questions to ask or anything because I get so nervous...like I said before it's been going on for many years so it's really nerve wracking to have so many issues but not know what's going on with you. Everyone keeps saying the only way to fully diagnose endo is through surgery but that seems so scarey to me because what if it's not that then I went through all that for nothing.

[Letty2017]

Natalie I had a daughter with the same problem as you. until a lady told me this...an old remedy which is called Lydia Pinkum you can find it in a drug store if not order it. you only take this the days you are not menstruating and the days you are on your period you STOP completely. this really helped my daughter . she would bleed so heavy blood would run down her legs as she stand up from the toilet.