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Elizabeth’s Story (Endometriosis, PCOS)

Elizabeth's Story (Endo and PCOS)When I was thirteen I got my period. I was excited because all my friends had gotten theirs already. It was light and lasted three days. I was happy to tell my friends about it. But then I didn’t have it again for six months. When I finally got it I bled for three months. I was told it can take a year to straighten out. My cramping kept getting worse.

At 14 I was diagnosed with a large ovarian cyst and was put on the birth control pill, but I still had pain. I had to convince a specialist to do surgery on me after one doctor was convinced I had endometriosis as well as PCOS, but refused to operate since I was so young. After my surgery, I was told I had a chocolate cyst removed and “stringy, white” endo off my uterus. He left a chunk of white endo on my ligament close to my bladder (he was afraid to attempt to remove it).

Flash forward two years. I was in pain again. Even though I was not allowed to have a period (continuous birth control) due to the pain, the endo had returned. I had surgery with a specialist at 18. Adeno was mentioned. The piece in my ligament had grown and it was removed. Flash forward one year now. ER visits and pain became normal, I had pain with sex, and pain with breakthrough bleeding because my birth control pills weren’t strong enough.

At 20, I had another surgery, after an unsuccessful round of depot Lupron, which made me so sick I lost 15 pounds off my 120 pound frame. Despite the Lupron, I had small spots of cul de sac endo spread out. It was excised. Flash forward eight months, I had four different birth control pills, with rounds of progesterone therapies and painkillers. I am sitting in my bathtub crying because nothing will take away my pain for more than a few months if I’m lucky.

Doctors don’t know if I can have children. I am depressed, angry, in pain, and even my specialist seems to have become frustrated. He took me off my painkillers and told me to see if this new pill worked. My professors don’t understand why I have so many absences. The thought of sitting on a hard stool for three hours enduring cramps and twisting nausea kill my drive to become a vet or anything else productive for that matter. I try to hold it in because I know that unless you have experienced it, you wouldn’t understand. I am not that friend who got pregnant and was okay, or that took birth control and was okay. I’m the one that sits alone with her heating pad and wishes she could talk to someone who wasn’t sick of hearing about it. Maybe one day there will be a cure for girls who have tried everything that never works. After all the painful testing, hormone therapies, and nights crying, I know I have the strength that many lack, which is the only good thing to have come from this disease.

Elizabeth
Kentucky
Submitted 04/12/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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7 comments

  1. I have a very similar story. No one understands why I never want to leave my bed. I get so upset knowing no one else understands. I try to explain it and they seem to think I’m faking the pain. I was diagnosed with endometriosis at age 14. It keeps getting worse and worse over the years. I’m only 16 and I’ve ruptured endometriomas constantly. I’m on a Mirena to try and stop the disease and my cramps just seem to get more unbearable as time goes by. I am losing ambitions to do anything that involves a lot of moving and my life is completely altered. It’s beyond frustrating to not know anyone besides my mom who has this disease. It’s reassuring that other people out there have similar situations.

    • Hi Addy,
      I know how you feel when you’re frustrated because no one understands your suffering.
      After I showed pics of endometriosis to my hubby n he saw that surgery is a treatment option he’s like have surgery. I’ve had 3 exploratory laparoscopies, 1 fibroid removal surgery all of which have caused scar tissue. So when I say I’m not interested in more surgery they seem to think I must enjoy suffering or that my pain is probably not that bad!!!
      Pray for them is what I’ll do LOL!!! In the meantime I’ve taken up a quest for homeopathic treatments.
      In fact I’ll be going to buy several items from Wholefoods such as Dong quai n Evening primrose n some other stuff I’ve read that is supposed to help with this condition. I will continue to pray and ask God for healing but until that happens I’m also going to give acupuncture a try. I’ll report back in 1 or 2 weeks after today’s post to discuss my regimen and share it here in hopes to get us fighting gals some relief.

  2. I’m 14 and was diagnosed with endometriosis march 25. They took me off of birth control and onto this hormone pill. I feel as if the birth control helped so much and this hormone pill is doing nothing if anything. The pain has been so unbearable these past few weeks. I’ve practically been in bed for a week trying to stop hurting but sometimes the pain medicine doesn’t even do anything. No one can understand but I know my mom tries. People at school act like it’s not a big deal but they don’t understand what girls like us go through. No doctors are able to even get me in until next week and won’t call anymore pain meds in so I just have to wait a week, and if it gets bad enough again go to the hospital. It just really makes me feel good to know that other people actually know that I’m going through that I’m not over exadurating the pain level.

    • I am the same way and understand 100%. I’ve spent my whole 20’s and now 30 and in severe pain 24/7. I cannot work, exercise, do things, play and take care of my children like I should, and I’m in bed literally everyday. I feel so helpless and like I’m the only one who is in my world. Friends are no longer my friends and my relationship with everyone is down hill. I’ve always been there for those I love and I bent over backwards for them but now that I’m severely sick, I get the cold shoulder. I’m so tired if crying and living because my body is very tired. I wish that I could give you my personal number so we can chat. It’s hard to find someone who really understands and listens.

  3. Elizabeth, Your story made me cry If you ever need someone to talk to I am here for you. I am currently trying to get an insurance or quite possibly have to come up with money out of pocket for my laparoscopy/ cystectomy. My gyn thinks I have endometriosis and that my left adnexal mass I’ve had for three years is a dermoid. I know exactly how you are feeling and what you are going through. For the longest time I felt alone I am almost 25 and have no children I so badly wish to still have that opportunity.. I wish I knew sooner I could have endometriosis, or even what it was I would of got it under control sooner. I will share my story on here soon. I’m so glad to find places to talk to girls who can relate to what I’m going through and have been going through since I was 14

  4. Just to clarify, the exploratory laparoscopies didn’t cause scarring. The Dr lasered off some of the endometriosis lesions on 2 of those occasions. This is what caused the scar tissue. So each time they laser or burn the stuff off the body responds naturally to heal itself and so scar tissue is formed. So it’s quite a vicious cycle to have more surgery that will ultimately make you feel worse due to more scar tissue being formed. Not to mention the risks associated with general anesthesia.

  5. @ Elizabeth and Everyone here.. Please be encouraged. I too was diagnosed with endometriosis and fibroids at early age and was told that I most likely would not be able to have children. I took Lupron which was horrible!!! Hot flashes galore at 24!!! I stopped after 1st round it made me so sick and forgetful! Not good while in Physician Asst. Program which is very competitive and need to study n retain info.
    The good news is that I did get pregnant and have a wonderful daughter!! So please stay prayful guys and don’t give up.

    P. S- Pardon multiple posts in 1 day. I’m just super excited to have found this forum, and just thrilled to have others who know the deal personally about this endometriosis battle! My hubby is great n supportive but he’s no girl!! Lol

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