MfrBeth is a bit tough to type, so I’ll call her “Beth.” Beth’s daughter started showing symptoms of Endometriosis when she was 12 and was diagnosed with Endo when she was 15 years old. Now 16, Beth has questions pertaining to her daughter, and shares her journey today.
Beth’s Daughter’s Journey: My daughter started having what we now know as endo symptoms at age 12, not long after her periods started. We did hormone check to see if they were not in parameters and she went on natural hormones-estrofactors and progesterone cream. This helped for a while, but she always had to go to nurse office at school for Midol for 1-2 days of her period, would be nauseous and have a headache and cramping.
About a year later, the cramps were beyond tolerable and Midol wasn’t helping. Went to OBGYN and she said to take Ibuprofen 4 tablets (800mg). Worked for a couple months, then excruciating pain with periods.
Went to ER’s with them telling us to go to OBGYN. Made them do an ultrasound to check for cysts-clear of those at that visit. Continued to do natural hormone progesterone, but I took her off Estrofactors because I read the link of high estrogen to endo and figured it was making things worse. Helped only a little. Things continued to get worse and she would miss 1-3 days of school with every period. OBGYN wanted to do the pill. I was hesitant due to her having weight issues already. She also didn’t want to do the pill.
Finally, at age 15, we went to see my niece’s OBGYN because he was the one who finally helped her with her endo suffering. He took my daughter in for emergency surgery. The staff ridiculed him for doing endo surgery on a 15 year old! They found out we and he were right. He found a moderate amount of endo and removed it.
She felt awesome for almost 6 weeks when her first period started after the surgery. BAM! Right back into it all.
He put her on birth control. Did nothing. Depo Lupron shots in addition to birth control-no help, constant headache and periods continued. Depo Lupron alone and no help, periods continued. We read a researched what we could find. Went back 5 months later begging for a hysterectomy to at least stop from getting new lesions. My daughter also is the carrier of a muscle disease and didn’t want children. Dr. was still hesitant to remove uterus. Then I showed him pics of her brothers who have the muscle disease and he understood.
She had only the uterus removed and cysts taken off right ovary, all endo that had been removed 5 months earlier was back!!! This surgery helped some, but not enough. 4 months later we found Center for Endometriosis Care and had surgery again. Lots of endo, scar tissue and scarred appendix removed, R ovary removed had 10 cysts on it! She has felt much better since as far as abdominal endo. However, she ended up with a headache about 5 days after surgery and still has it 7/8 out of 10 every day (it has been just about 2 months).
She is wondering if she has endo in her lungs as well as her brain. Already been trying to get help from local neurologist and Center for Endometriosis Care but no one is helping yet again! She is only 16 and I am so worried about her mental state due to all this pain and problems. She is beginning to feel that no one is going to help her. This has been a 4 year journey already for such a young person 😦 Who should we go see? As in who is the expert for endo in these areas? Lung and brain?
To Beth from Lisa:
I want to send a special Thank You for sharing your daughter’s journey with us, and reaching out for help. Unfortunately, Endometriosis of the lungs and brain are considered very rare. I hope you can find some answers and direction there. And, please be aware that it may not be Endometriosis, but other causes of her pain. Finding the right physicians to talk to about her symptoms will be so helpful. Please continue your search and advocacy for your daughter’s health. Your a good Mum. I wish we could do more.
And if YOU would like to share your story, please submit it to me and I’ll share it. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.