I am about to turn 23, I was diagnosed with endometriosis a few months ago. I had a lap about 2 months ago where I had to have endometriosis, an ovarian cyst and my left fallopian tube removed (from damage).
It's only been 2 months and all of my symptoms and pain are back, possibly even worse. I want opinions on what my best option is.
My case is a bit strange though. I have been very sick for the past 3 years. In the last 3 years I have been diagnosed with osteoporosis, hyperparathyroidism, hypercalcemia, severe nausea, severe migraines and occasional tachycardia. After a lot of research these past two months I have found out that severe endometriosis can cause all of these problems if left undetected over time. I have gone through many genetic tests and tests for every other possible condition my doctors thought was causing all of this. They have found nothing in 3 years till this.
The best I have felt in the last 3 years was for first month after I had the endo in me removed. For that month I was able to eat, I gained healthy weight back, I didn't have a single migraine and was able to start working again (my fatigue was also gone) I want to feel that way again, for good. But after two months it all went back to before.
I know there is no cure and mine seems to come back very easily and quickly after being removed. Should I just consider having a full hysterectomy since most things I have read said it will be my best choice to have them not come back? I understand that means I will never have kids and will go through early menopause, but if it means not being sick and able to hold a job for the first time in 3 years I think it may be worth it.
I would really love some feed back or any ideas for other options.
Oh also, I have been on multiple birth controls and they have not helped, and since I already have osteoporosis I am not able to willing take the shots available. So medicines don't seem to work with my conditions.
I want to say I understand your frustrations with this disease I have been there. It took 17 yrs to diagnose and and 6 yrs later I still have issues.
What BCP's have you tried and what side effects did you have?
Dome of the symptoms you are having are identical to the ones I had before my surgery and I am pretty sure that I was estrogen dominant.
Have you checked your Hormone levels?
Did you have excision surgery or laser? This is very important.
I do not think that a hysterectomy is the best way to go at your age more so because you already have osteoarthritis. You will also be at risk for early onset of dementia as well. Please research on hysterectomies more if you can. Yes it can help some people but some it does nothing and could make it worse. I too was debating the hyster but I decided that I didnt think it would make a difference because I had severe Endo with a lot of adhesions.
The key to combating Endo is first find the best Endo surgeon you can that knows how to EXCISE all the Endo leaving none of it behind.
The second step is taking something to suppress your Endo that is the only way to combat it. I know you are having troubles finding something but this disease really is trial and error.
I tried multiple ones and the one that worked best for me was a low dose BCP called Marvelon. I have tried Lupron and Visanne and I will never take them again. They caused a lot of joint and muscle pain even with the add back medication and severe depression.
Before my surgery I was having severe migraines, hospitalized sometimes for over 100 hours because they wouldnt go away. I also had hypoglycemia, heart palpitations, severe nausea for 2 yrs I couldnt even go in the sun. I had acid reflux for a year and was medicated for it. I have spinal and hip pain with Osteoarthritis in my jaw.
Since my surgery and my 2 rounds of Lupron and since being on Marvelon I no longer have nausea, I have had one migraine in 6 yrs, less heart palpatations, no more acid reflux, etc. The pill worked for me and my doctor is amazed because it is such a low dosage.
I ended up with PID which caused severe damage to the amazing surgery I had had. So after 6 yrs I had my surgery last week to remove any Endo and scar tissue etc. When she went in all I had was superficial Endo. So it shows that excision was the best method and that the pill has worked for me to suppress the endo.
I know for me I found something that works now all I need to combat is adhesions that keep causing bowel obstructions and an embedded ovary in my pelvic wall.
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