ENDOMETRIOSIS. AGONISING & MISUNDERSTOOD

BODY IMAGE, HEALTH, USEFUL

I’ll be honest, until a year or so when someone close to me was diagnosed with endometriosis I had limited understanding if what it entailed. But now the more I learn the more flabbergasted that something that is relative common and so life altering isn’t better represented. Which is why I grateful to this writer, who wishes to remain anonymous for sharing her experience.

  • I’m 22 and have a chronic illness, endometriosis and adenomyosis.

  • Endometriosis is very common and it’s thought that 1 in 10 women have it in some form, however there is no cure and very little research or funding goes into it.

  • It is essentially where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. In my case it has attached my bowel, bladder and reproductive organs into one tangled mess.

  • Adenomyosis is where the inner lining of the uterus grows through your muscle wall in other places too.

  • For me this means heavy (and I mean heavy) bleeding around 15 days per month, and pain so strong that I’ve been hospitalised and prescribed opioids.

  • I’ve had multiple surgeries to cut it out, but the persistent bugger grows back repeatedly.

  • People who say ‘Have you tried yoga/CBD oil/a plant based diet/anything else?’ You really are the absolute worst, however you aren’t as bad as the people who say ‘Just try being positive and I’m sure it’ll go away!’.

  • It has also impacted my life in other ways.

  • I have next to no social life as my condition is so unpredictable that I can barely commit to anything.

  • I miss out on after work drinks as I need to go home and sleep due to low iron levels.

  • I can’t have red meat or soya due to the hormones.

  • I can’t have more than a couple of drinks as I worry about my iron levels, low blood pressure, thinning my blood and creating heavier bleeding, and not being able to take my painkillers.

  • I spent a 2 week holiday to Barcelona curled up in a hotel room crying due to the pain.

  • I’ve harboured the most awful feelings of guilt, resentment and hatred for myself and others around me.

  • Work is exceptionally tricky, as despite being an advocate for gynaecological education, I still find it hard to explain that this is the source of my pain.

  • I feel like a fraud when I present my disabled railcard, or wear my ‘Please offer me a seat’ badge, or flaunt my ‘Please let me use your bathroom’ card.

  • I know I am as deserving of these things, however I feel that when you look at me, you see a healthy 22 year old girl, not a sick person.

  • I get self-conscious taking my bag to the bathroom every hour to change my pads and tampons.

  • I feel embarrassed having to call in sick all the time, and feel like I’m missing out on opportunities and office banter.

  • Anger bubbles inside me like a river of rage when girls I work with complain about period pain and pop a Feminax. I want to scream at them to shut up as they don’t know what it’s like to vomit and shake and pass out because of it.

  • Speaking of period pain, whenever someone reduces my feelings to bad period pain or ‘women’s troubles’ I feel like they’re suggesting I am making it up, or I’m being wimp.

  • Humiliation eats me up when I go to fill up my hot water bottle in the kitchen, or take it into a meeting with me.

  • Last week I needed to go for a scan during work time, I explained this to a colleague and they joked that I was pregnant. It cut like a knife.

  • I couldn’t tell you about the best bars in London, or the coolest holiday destinations, but I have some great surgery recovery tips!

  • My family and relationships have suffered too. My poor boyfriend is an absolute saint and has stuck by me since I was 18, enduring endless treatments and hormonal medications that leave me in such fragile emotional states.

  • He must feel like he is constantly on eggshells.

  • We barely have sex as it causes me such pain that we both end up feeling guilty. Him, as he thinks he has hurt me, and me as I feel like I can’t pleasure my own boyfriend.

  • I’m 22 and can’t have the juicy and salacious sex lives of my peers as my body can’t take it.

  • We can have a short burst of sex in one very specific position, at a time when my pain levels are low and I’m not doing anything the next day so I can recuperate with a hot water bottle. So romantic.

  • Sometimes I wonder why he is still with me.

  • I know that I probably can’t have or at the very least will struggle with having children.

  • Yet, he sticks by me and says it doesn’t matter, we have options like IVF, adoption and surrogacy.

  • He is 24 and should be living it up like his friends, who take their girlfriends on exotic holidays, nights out and lavish nights away.

  • He shouldn’t be taking annual leave to take care of me and running to Boots for more pads and tampons, again.

  • We’ve discussed starting to try for children now, and his parents have said they would support us financially.

  • This makes me feel robbed of so many things.

  • I want to have my career, buy a house and get married before thinking about these things.

  • I don’t want to try to conceive out of fear. That’s not what I want for myself or my family.

  • Because of the uncertainty of my fertility, I have become obsessed with motherhood.

  • I know this probably is unhealthy behaviour but I’ve allowed it.

  • I follow all the popular (and some smaller) mummy accounts, I read forums, books and blogs.

  • I browse baby and maternity clothes online, looking up what the best breast pump is and reading birth story after birth story.

  • I have how I’d like to announce my first pregnancy all planned out in my head.

  • I watch family vloggers, and especially like the large American families with loads of kids.

  • I’ve seen every episode of One Born Every Minute and similar shows.

  • I have lists of baby names for children I may never get to have.

  • I am a woman obsessed and I worry about how it’ll impact me in the future.

  • I already feel like my body has failed me and I can’t do the one thing I’m supposed to be able to do.

  • I feel hideously let down by the NHS.

  • When I first went to my doctor about the pain and bleeding at 14, they shoved me on the pill and told me to get on with it.

  • I thought it was normal.

  • I remember asking my friend Alice in P.E. how she dealt with the olive sized blood clots when she was on her period.

  • She looked at me like I was insane.

  • I’ve now been on some form of hormonal medication for 8 years.

  • I’ve read horror stories of women who come off it after so long as they want to have children, and they find they are an entirely different person.

  • What if I am no longer attracted to my partner?

  • Or what if he no longer likes me?

  • I had an emergency surgery as an endometrioma (or chocolate cyst) had burst and I had appendicitis from it.

  • When I came round from recovery there were no beds, so I was left in a corridor without any way of contacting my family.

  • They discharged me after 2 hours. I had to be admitted to a different hospital by ambulance that night.

  • I still get flashbacks and nightmares about that chain of events, 3 years on.

  • One doctor told me to ‘pop out a couple of kids and it will go away’.

  • He obviously didn’t think about how I may be infertile.

  • I’ve had nurses tell me to stop being dramatic when they’ve done internal examinations and wince.

  • I’ve had sonographers tell me that they can’t see anything abnormal and I’ve wasted my time.

  • I’m now on the waiting list to see a global specialist.

  • My options will likely include things I’ve tried before, like new hormonal medications, or surgery to cut out any new growth and cysts.

  • But with every surgery, recovery gets harder and new scar tissue is created, which can make adhesions (where your uterus/organs stick together due to scars), which can then tear and cause….. pain and bleeding!

  • My stomach is already marked with so many scars from operations.

  • I haven’t worn a bikini in years because of this. However I am going to try and wear a bikini on my upcoming holiday.

  • There is another option that I could try.

  • It involves hormonal injections that put you into a medical menopause. In theory this should stop the growth of the endometriosis and adenomyosis.

  • It has varying levels of success and can cause serious mental health problems too.

  • Alternatively, I have a full hysterectomy. At 22.

  • And therefore give up my dream of ever carrying a child.

  • However, it isn’t all doom and gloom, as this list may suggest.

  • There is an amazing support network, both online and in person.

  • Seeing that someone you’ve followed online has conceived brings an overwhelming sense of hope and happiness, and being able to reach out and offer a hand in times of darkness also builds a wonderful community.

  • I hope that anyone who may be suffering with this finds something that works for them, and that you’re able to live a normal life.

  • I also hope that one day we find a cure and start taking women’s health problems seriously.

  • I can’t help but think if endometriosis affected men, we would probably have found a cure by now.

If you’d like any more information on endometriosis, I suggest visiting www.endometriosis.org or www.endometriosis-uk.org, there is also a film called Endo What? Which is very informative.

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5 Comments

  • Reply Helen June 25, 2019 at 11:32 am

    Thank you for writing this post and educating me a bit more about this horrible condition. You are very brave. I really hope that you find some treatments which help. xx

  • Reply Ronja June 25, 2019 at 7:48 pm

    I’ve never commented on anything on a blog and English isn’t my mother tongue, but I so geel your pain and suffering and I hope I can help as a fellow endo-woman.
    It took 7 years to be diagnosed with endo (I was 21 at the time), all doctors told me that the pain should be normal or that there are psychological reasons for my symptoms (“Did you have a bad childhood?”).
    Then I finally found a specialist (I live in Germany), was operated and put on menopause (again, I was 21 at the time). It’s hard but there is so called add back medication, which reduces the symptoms caused by the injections. At most time I was just tired. I did that therapy for 10 months and then hormonal therapy, so that I did not menstruate anymore which dried out most of the endo tissue. Then I continued with a strict diet (n wheat, no sugar, no dairy). It’s based on medical evidence that these ingredients make endo symptoms worse. After that I tried to get pregnant – successfully – and am now a mom of two. Endo really is a thing of the past now (I’m 30 next month).
    Hopefully I could show you that there is a silver lining and although every endo patient and endo history are different, there are ways to get better. I wish you all the best and many happy, healthy years to come <3

  • Reply S sheppard June 25, 2019 at 8:38 pm

    I’ve had endometriosis for 24 years now. Years of agony and being made to feel like I’m going mad. However just to reassure you I’ve conceived three times. But it’s not true that it goes after children. Not for me anyway. Now I’m on the pill back to back which works really well but when I tried to come off it for a break and to have my hormones checked I felt like I was coming off heroin. Horrendous side effects and agony. Doesn’t seem like there are any easy solutions. Good luck and try stay positive. I had all the same things said to me ‘you need to have babies NOW’ (when I was 25 and single!?!) but I had my first baby at 31. Hope this gives you hope x

  • Reply Disha June 30, 2019 at 7:35 am

    I have it, and it got to the stage where I just lay in bed crying. Had two Ops. They said it would come back, so for the last 9 years been on back to back Yasmine so I don’t have periods. Maybe something to consider.

  • Reply Laura June 30, 2019 at 8:01 pm

    I can relate to so much of your list…. it’s an all consuming and exhausting illness that is so very much misunderstood like you have explained so well by each point you have made. I am always so sorry when I read what other people have gone through but I never thought I would have children too because of it but after one final hefty and agonising surgery and some serious hormone treatment whilst I was ready to try again for children my body gave in and it happened and I keep everything crossed that the same will happen for you. I had so many people tell me to have a baby as that will cure it and they have no idea how much of an extremely upsetting and contradicting comment they are making as like you, I became extremely obsessive about having children as I had been trying for a long time which is hard in itself because of the physical reasons you have mentioned and to then have the fear that it’s never going to work – well it’s just all consuming isn’t it. In the end I had counselling to help me come to terms with how I was feeling which really helped. Thank you again for sharing your feelings and experiences, I hope that you get all the help and support that you need to keep fighting!

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