Hey, I was diagnosed with endo when I was only 15, I’m now 16. I spent time going to 4 different doctors all having them say it’s endo but I had to live with it. My advice because I know how much it sucks, is to get a laparoscopy to confirm, this Is your decision but it was the best thing I’d ever done x all the best
I just came across this question while googling my own problems. This sounds a lot like my experience. It's been 11 years for me, but I was able to get pregnant a few years ago and had relief from my symptoms during pregancy and while breastfeeding. Unfortunately when I stopped breastfeeding and my ovulation started up again my symptoms returned. Now I have a doctor who has finally agreed to do a laproscopy and give me some answers.
I've heard the "you're too young" bull ****. I'm sorry you're dealing with that. But all I can recommend is take Yaz birth control, or something similar. That helped me function for years, but it didn't completely alleviate my symptoms. And keep telling doctors what's wrong, don't be discouraged. I wish I had told my doctors more and been more assertive when I was younger, but now I straight up demand answers and that seems to get the message across. I had to insist on the laproscopy.
The one thing I can say is don't give up there are doctors out there that can help. I had five laparoscopy since I was 18 years old I was having them every 6 months for my endometriosis but I was also getting ovarian cyst that kept rupturing and causing me to have internal bleeding that they would have to go in and do emergency surgery for. I know that they can do a hysterectomy which that's what they finally did to me and it's been almost two years now and it has been the best thing I have ever done. The doctors kept telling me I was too young to have it done and that I might want to have more kids I was lucky enough to have my son but with all my health problems I said no more kids I would rather adopt. It took me years to finally find a doctor that wanted to help me all the other doctors I came across just kept telling me there was nothing they could do for me which was Bull. I was determined and I never gave up if you're hurting that bad please don't give up there are good doctors out there that can help. If you have to just keep going to doctor to doctor to doctor but just keep your head up I know it's hard but hopefully you'll get help soon.
When I started my period I had severe cramps, lower back pain, nausea, vomiting. At that time my gynecologist would not run tests and told me to take Tylenol. This was back in the 1970's. I had 4 pregnancies. 1 still born at 6 months, miscarriage at 3 months, and 2 healthy sons. When I started having labor pains I couldn't believe it. They felt just like my severe period cramps! I told the Dr and I don't think he believed me! After my second child we decided not to have anymore children. Still had the period cramps and lower back pain. Finally the Dr ran tests that showed something was not normal with ovaries and uterus. He did exploratory laparoscopic surgery. After he saw what was in there he called my husband in the waiting room to inform him my ovaries and uterus were (as he put it to my husband) eaten up by endometriosis and I needed total hysterectomy. We had discussed this before hand and agreed if that is what he found and it was bad do the hysterectomy. Ovaries and all. I never had cramps or lower back pain again. Good luck to you.
I totally feel your pain. I too had debilitating periods when they first started. To the point I was curled up in a ball and crying. I also had extremely heavy cycles. Definite symptoms of endometriosis. Only problem was that I was regular. I mean so regular that I knew the exact day my period would start. I was only surprised 2 times in all the years before I had my tubes tied.
I got pregnant 3 times, all 3 times were within a month of stopping BC pills. The 3rd time being the one I found out I can’t take BC anymore. 1st pregnancy was the only living child. Lost my 2nd at 16-1/2 weeks & 3rd at about 2 months. With 2 losses, I couldn’t bare to chance another loss, so had to practically beg my doctors to tie my tubes. I was barely under 30, not married and only had 1 living child, but he was already nearly a teenager. Unfortunately, getting my tubes tied was probably the worst decision I made. Not because I want more children, but because of all of the side effects I’ve suffered since.
Since having my tubes tied, my periods have become irregular, more painful, and accompanied by menstrual migraines.
I spent the better part of the past 10 years fighting with GYN doctors, being told I was too young, or we all go thru this every month, or there’s not enough wrong with you. I have been to nearly every female GYN in my area. The closest I got to some sympathy was from a nurse midwife that noticed something in a pelvic ultrasound. She ordered transvaginal ultrasound which showed I had a couple of cysts on my ovaries, but they were very small (<3mm). It also showed the lining of my uterus to be thicker than normal, which led to a biopsy (very painful) to rule out cancer. Since a nurse midwife cannot perform surgery, she had to refer me to a surgeon, who refused to even examine me. She only looked at the ultrasound & biopsy results, then told me that she didn’t think my uterus was thick enough to do a laparoscopy, which is the only way to be 100% sure it is endometriosis, which is what the nurse midwife thought it was.
Took me another couple of years to decide to try a male GYN, who I wish I had seen long ago now. He has been the first GYN to actually listen to my complaints and had no hesitation in scheduling the laparoscopy, where he found several endometrial adhesions and a couple of fibroid cysts. He said a couple of the Endo spots were old and scarred. He explained that I would likely end up with a hysterectomy, but in order to get my insurance company on board, we’d have to jump thru some hoops.
He entered me into a clinical trial/study, that many women have had great results with. However, it did nothing for me. Now that I have tried the medication for over a year, he feels that the insurance company has no reason to deny a hysterectomy. Of course, he had to tell me that it may not relieve me from the pain & suffering, because there’s always a slight chance it won’t, but I’m so excited that I can finally have it done soon.
Anyway, the short version, there’s a doctor out there that will listen, and hopefully you don’t have to fight with as many as I did to find the right one.
PLEASE locate a new Dr. who respects & honors your wishes (as all should) I was ignored by former gyn Dr. Had my 5th major surgery at the end of last yr. Endo has caused so much pain etc. Resulted in a temp ileostomy. Please, YOU DON'T want this. I have permanent nerve damage, pudenadal neuralgia, severe & constant scaitica & much more!!! Please go to someone else. You need a MRI of your abdomen & pelvis & exploratory laparoscopic surgery. Sending bunches of hearts to you my endo sis!