Woman shares message: Very painful periods are not normal

PARKVILLE, Mo. — Millions of younger women have a disease that can be painful, depressing and even debilitating. It’s called endometriosis, and it often goes undiagnosed because women think their pain is just a normal part of having periods.

Sheena Ivy of Parkville had symptoms of endometriosis for years before she was diagnosed.

“It would just hurt so bad that I would vomit. So sometimes I would shake. Sometimes I would get just really, really sick,” Ivy said, referring to the symptoms she would have with her menstrual cycle.

With endometriosis, tissue that normally lines the uterus grows elsewhere causing inflammation, scar tissue and adhesions.

“So it affected my bladder and then also affected my bowels. So when I had the surgery for endometriosis, my ovaries were sealed to the sides of my abdomen, my fallopian tubes were completely blocked, and I actually had it on my bowels,” said Ivy.

She takes multiple medications for endometriosis and related problems. She says even after six surgeries, she still suffers.

“So it’s really hard and the heating pad is my best friend,” she said.

Ivy encourages other young women to not wait to talk to their doctors about pain with their periods.

“It’s not normal to have pain to the point you can’t function. If that is the case, get into your doctor ASAP and just really push to have it checked out because all doctors don’t know about endometriosis, and they don’t know the extent of your pain unless you tell them,” said Ivy.

It’s important to note that some women have no pain with endometriosis. They don’t know they have it until they seek help for infertility that can be caused by the disease.

There is no cure for endometriosis, but various medications and surgery can effectively treat it.

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19 comments

  • kathleen seymour

    I did not know I had it till after 3rd child, my son and her are 11 years apart, went in to get my tubes tied. I still don’t have any systems and I am 47. My doctor was surprised because she said she was shocked I became pregnant with 3rd child. My oldest daughter is having issues with getting pregnant, she talked to the doctors about me to see if it is genetic, doctors say she has other issues. Really would like to know.

  • Portia Madiseng

    I wae supposed to go for a laparoscopy in 2010 but couldn’t, the pain is Xtremely bad during ny periods & when I have to take the stairs the pain drags to the feet. Am afraid to even try to concieve ,will I b infertility at my age of 28??

  • Jennifer

    From 16 to 28 I saw multiple doctors, unknowingly laundry listing the symptoms and going undiagnosed. I finally found a doctor who would listen. While living with endometriosis is difficult, I was just grateful to know that what I was going through wasn’t in my head and that there was a doctor who was listening. Don’t give up until you get an answer!

  • Jerri

    Please also look at Myofascial pain syndrome due to the pain that is involved with after having Endometriosis and Adenomyosis which I had both and in paint all the time..now I have Myofascial pain syndrome and have to learn to relax my muscles all over again due the the amount of pain I was in for years. I also had a Bicornuate Uterus (horned/ heart shaped uterus). Myofascial pain syndrome is becoming more common. http://www.mayoclinic.org/diseases-conditions/myofascial-pain-syndrome/basics/definition/con-20033195

  • Carleen Mayberry

    I still have it but I don’t have a uterus I onky have my right ovary left and faithfaully evry month it shows up without warning I have cramps and it last for 4 days. I have been to evry doctor and they are puzzle why this is still happening.

  • sharonmcbride431

    You still have it because you still have an ovary that is producing hormones. Edometriosis cells thrives on hormones, and Edometriosis is probably in other areas of your body like on your bladder or kidneys.
    The simplist way to put it is that endometriosis cells act just like your regular period…once a month they shed cells and flow outward, but because they are in other areas of your body where they are not supposed to be (like on your bladder), the shedding doesn’t exit your body… it just gums everything up and causes a lot of pain and scar tissue…hence most people with Edometriosis have infertility issues. The only way to get rid of completely is to not have any more hormones — at all. Without hormones the Edometriosis slouges off and dies. As a result some drs prescribe medicine to their patients to make their bodies “think” its in menopause (ie produces no more hormones) or they perform a “total” hysterectomy — which means no more ovaries.. no more baby making parts…
    nothing.
    You need to go to a specialist to explore your options… a regular MD is not going to have the proper knowledge.

  • Shirlee Wood

    I have been dealing with endometriosis since I was 15. Just had my 11th laparoscopy on 12th of Sept where they also removed my tubes due to so much damage. I was blessed with my daughter almost 7 years ago, very difficult to get pregnant and carey baby full term but made it with my angel. Im soon to be 30 and still having problems with endometriosis. Was put in menopause by my doctor for 14 months and still came back. Now trying to just get a hysterectomy but now im hearing im too young for that and don’t have enough children. Really?!?!?!? Its a constant fight and frustrations. I feel for all us ladies affected by this.

  • Lisa

    I had painful periods. Started my cycle when I was 11 yrs. old. Always had bad cramps. Years later I struggled to conceive a child. We tried for 9 yrs to get pregnant. Eventually, ended up conceiving and delivering a healthy baby girl w/ the help of invitrofertilization (IVF). Dr Gregory Starks was my fertility Dr. Unfortunately even laproscopic surgery didn’t help me. Even tried Lupron. The only way I manage my symptoms now is with Birth Control pills. Anyways my infertility was due to the endometriosis. If you have painful periods, get it checked out early on! Don’t wait until it’s too late and you are dealing w/ infertility for years and years!

  • Paula

    ok…so a few facts, because I’m seeing some common myths repeated here.

    1) Endometriosis is NOT the same as the lining of the uterus. It is similar but at the micro cellular level has hundreds of differences. Therefore it does not originate in the uterus and removal of the uterus will not prevent it. (If you have adenomyosis however, which is a uterine condition, hysterectomy will cure that).

    2) Endo patches do not bleed with your cycle. They secrete irritants which cause bleeding and inflammation in the surrounding tissue. Semantics maybe, but an important point, and one that very few gynaes are actually aware of.

    3) Hormone treatments which shut down ovaries and therefore oestrogen production do not cause endo to ‘die off’…..the endo may go ‘quieter’ and less visible but it doesn’t disappear. For this reason hormone treatments prior to surgery are a bad idea as they make the endo less visible to the surgeon and more easily overlooked.

    4) Endo patches can produce their own oestrogen – they are self-sustaining. This is why the pill and other hormone treatments do not help for all women, and why pain can persist even after a full hysterectomy.

  • Alina

    I had my first periode when i was 11 y o and i remember … my 1st day of periode was sososos painful that i vomited.. and this repeated every month… for years and years..
    At the age of 26 i had a laparoscopy and they found at the biopsy that i have Endometriosis… and tthis was the reason i was having those painful periodes.. i wish i could have found this a long time ago…
    Now i am 27 and i am taking oral contraceptives, and i dont have painful periods anymore.. now, i can say that i am normal… and i can have a normal life…

  • Judi

    I am glad to see this article here. I was diagnosed with endometriosis about 30 years ago, after 7 or 8 years of dealing with the pain described here. At that time (maybe still today), women were told to just deal with the pain because it was normal. That simply is untrue. I was fortunate in that the medication I was given to simulate menopause and then four years of birth control pills helped put my cycle on schedule with minimal pain after I finally sought help. The pain never did go away completely, and about 8 years ago, I had to have a complete hysterectomy in part due to the endometriosis. I refused to take HRT afterwards because of an article I read that pointed out what Paula says above, that endo thrives on hormones. For about a year or two after the surgery, I still had pain every month but eventually, even that has faded away. I strongly urge women with pain to talk to their doctors, and if they won’t listen, CHANGE DOCTORS! I am sure there are many good doctors who will take you seriously. You can get treatment for painful menstruation, and suffering through it can cause far worse problems in the long-term. Thanks, Sheena Ivy and Fox 4 for speaking out!

  • Morgan

    But taking the uterus and both ovaries and going through menopause for a few years will cure it. Shutting down the main supply of estrogen that feeds the remaining tissue for enough time that it will die away and not regrow each month…… I had it on my sciatic nerve for six long miserable years. I could tell when the Depo shot was wearing off within days of my next injection. I was so on tune with every bit of it due to the giant nerve connected/irritated by it. The very Dr who finally caved and did my surgeries said “That’s not exactly what endometriosis is” floored me. I really loved them calling to tell me all the biopsies came back with POSITIVE ENDOMETRIOSIS everywhere. My persistance paid off and I have my life back. After years of hot flashes etc… I stared on a very low dose of premrin and feel almost “normal” minus the painful monthly cycle.
    My theory is the endometrial cells are very much like the PSA cells screened for in men. These cells can “seed off” and implant ANYWHERE. They test for it in men post prostate cancer. Crazy how the human body works.

  • MaLinda RaNae

    I am desperate to find someone who can and will help my 17 year old daughter who was diagnosed last summer with endometriosis. We did oral contraceptives, we did the depot lupron, and now then found a doctor at KUMC who placed the Mirena in December. To no avail, she still is having extreme pain. They’ve done ultrasound to ensure the IUC is in place. She is not sexually active, so we’re considering finding out about having the Mirena removed as her symptoms have gotten worse since insertion. I had a total hysterectomy at the age of 29 (thankfully I was done having children), however, at my last laporoscopy, was told there is still signs of endometriosis. I am desperate to find someone to help her, and get this girl some relief. She is very worried she won’t be able to conceive when the time comes. So names of Doctors who you’ve had a positive experience with would be very much appreciated. We’re even considering having her eggs frozen now so that if she is unable to conceive and carry, she will have the option of a surrogate. Thank you for reading and any helpful advice would be much appreciated.


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