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Endometriosis: Experiencing the Menopause at 24

What it's like living with severe endometriosis

By Ellie HearnPublished 4 years ago 3 min read
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UK's definition of Endometriosis is:

"Endometriosis is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body."

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems."

Some of the treatments for endo are as horrific as the condition itself. They include but are not limited to: laparoscopy (where they either burn or cut off build up of endometrial tissue inside your tummy), being on the pill, hormonal and testosterone treatments, an induced menopause and loads of other weird stuff.

It's also nearly impossible to find a sympathetic doctor—some of the best things I've been told include:

"Don't get emotional." (I wasn't being emotional)

"Endometriosis is just a weird disease we don't know why it hurts sometimes."

"Being in pain every day isn't a symptom of Endometriosis—maybe you have IBS."

But, the worst thing I have experienced with this condition, including the debilitating pain, has to be going through the menopause.

Following a course of injections in my butt, my body was put into a state of false menopause.

The side effects were massive and horrible, my memory became awful and I lost focus. I felt constantly and completely fatigued, I was somehow still having periods, and my pain did NOT go away even slightly.

The hardest thing to live with was the hot flushes, I must have had about 15 a day. I couldn't sleep at night because I would be roasting one minute and freezing the next, which probably added to my brain fog.

Even with Hormone Replacement Therapy the side effects were completely awful and took over my life. I've been living with pain for a long time now and I can usually ignore it and carry on with my day.

The menopause completely debilitated me. It also completely ruined any (tiny) possibility of a sex life.

It can be impossible and excruciating for me to have sex, but with the menopause, it took away any drive I might have had. This creates so many strange feelings, and problems within a relationship.

I think it’s really hard to explain to someone that you love that you don’t want to have sex with them because you’ve never felt more gross. It’s hard for that person to hear that and not feel like it’s about them.

For someone to support you throughout that journey is really amazing and a lot of people wouldn’t be up to the challenge. It’s a daily rejection and it must be really hard to trust and believe that those feelings are still there when your actions seem to be contradicting that.

It totally took away my identity, I didn't want to do anything because I was worried I would have a hot flush. I couldn't concentrate through a film because my mind would go blank halfway through.

It was honestly awful. I wouldn't wish it on my worst enemy.

Unfortunately the battle continues, I still haven't found any treatment that helps and I am starting to feel completely hopeless about the situation.

Endometriosis UK has been really helpful—someone who works there sent a really helpful email and a recommendation to visit a BSGE registered practice and see what they say, so fingers crossed they can help me finally.

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  • Josh Sorensen2 years ago

    Thanks for sharing your story 🙏 ❤️ stay strong. You’re a warrior and never forget that. You may be 1 in 10 but you are stronger together. My wife has stage IV endo. She’s undergone 7 surgeries (much like what your cover photo depicts) all within the past 3.5 years. We’ve seen five separate OBGYN’s and they all were either dismissive, ignorant, over zealous, flat out under educated and severely lacking in proper medical equipment needed to diagnose, assess and remove any tissue fragments or adhesions/lesions etc. For a disease so prevalent and in a time of medical miracles, it’s about time all of you have a voice. A sense of sisterhood even maybe, bonding and understanding one another like no man could ever. Even best as he might try, man will never, ever begin to comprehend and quantify the sheer agony that is Endometriosis. Fatigue, and bloating so badly that bed is your only reprieve, as small of a comfort as that may be. Some days getting up just isn’t in the cards. The never knowing if today will be that bad flare up day. Or “omg did I just bleed through my shorts!?” panic and embarrassment that men will never know. The feeling of hope after being told of a “magic pill” that doesn’t ‘cure’ you but will certainly take away the endometriosis pain, bleeding and discomfort tremendously....but neglect to tell you how those meds ravish the body. Destroying organs and bones from the inside out. Or being told they removed it all and two weeks later they won’t believe your pain or that you feel like you’ve got another hemorrhagic cyst growing. They say “impossible haha doesn’t happen that fast” and then are speechless when they find a golfball sized cyst on your ☝️ remaining ovary- because oh yah, when you were under during your procedure, they had to remove your left ovary. It couldn’t be salvaged. Then only after that, doctors seem to realize how severe this is and how well you ladies know your own body’s and should be your own advocate about concerns or possible health issues. Furthermore, that you are heard from the start. My wife coaches college soccer here and they are having an Endometriosis Awareness game in the next few weeks. It’s my goal/dream to create a non-profit for all Endo-Warriors. An organization that spreads awareness, signs and symptoms. A place that’s safe for all. For every case, every scenario and every woman. A place for men to discuss what it’s like trying to understand this all, be supportive and inspire hope to get through another day. Or another dr visit. But a fellowship rather. As well as, crowd source funds for research, medical equipment, proper schooling and eduction to produce specialists in this field. Because there are roughly 100. Out of approx. 50,000 OBGYN’s in practice (in the US) that’s a problem. Also provide financial assistance for severe cases with no insurance or little means to have adequate care. A place where we can have the.....“Endo-Discussion” for good.

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