Women Share Their Endometriosis Stories And What They Think Needs To Change

Endometriosis Awareness

Today is International Women’s Day and March is Endometriosis Awareness month. I thought I’d highlight the two and speak to some women who have endometriosis about their stories and what they think can be done in terms of better awareness.

I first heard about endometriosis from a woman’s magazine (who says they only have superficial content?) and the list of symptoms rose my suspicion. I discussed it with my GP at the time, who was surprisingly quite sympathetic and started the investigation process immediately. Some time later, I ended up having a laparoscopy, that confirmed what the symptoms and pain I had suggested: I had endometriosis. It only took some 15 years to get a proper diagnosis! I believe that not only should people stop thinking that being doubled up in pain with their periods is normal but gynaecologists especially could be doing a better job of identifying the condition. Doctors, in general, should stop dismissing it as something that you ‘just have to get on with it’ or ‘it’s all in your head’, as I’ve sadly heard a few people say this was the way their complaints were perceived. As for me, I was able to stop the pain by eliminating periods altogether (by taking the pill continuously) and it was the best thing that’s ever happened to me.

– Sara, 38.

 

After five years of symptoms and constant visits to the GP; I was diagnosed with endometriosis at the age of 22. At the time, the most noticeable symptom was heavy bleeding during and after sexual intercourse. Since, I’ve had three excision surgeries and had hormone treatment which gave me a false menopause for six months. Despite this, my endometriosis is now at its worst. I am in pain every single day. I take the pill continuously in order to stop my periods, but I bleed whenever my womb feels like it! Intercourse is agony; urinating is agony; exercise is agony; sneezing is agony. My body is constantly exhausted and because of this, my social life suffers. I regularly take strong painkillers and I seem to permanently have a heat pad attached to my abdomen and back. I struggle with part time work; I struggle to keep up with my eight year old daughter. Endometriosis has taken over my life, and as it is still relatively unknown, I feel like I have no support. I think teenage girls should be taught about it in high school, and I’d advise any woman who suspects she may have it to keep on at their GP until they get help!

– Sinead, 28.

 

Endometriosis affects nearly 1 in 10, yet so many people are still completely unaware of it. My period have never been normal, but they were always brushed off as that by doctors for years. Even though my periods ultimately left me bed bound for days on end. I was prescribed the pill at fifteen years of age to help control both my periods and ovarian cysts. A year later, it was recommended that I stopped taking the pill due to the number of migraines it caused. This decision was the start of what possibly was the worst seven months of my life; this decision saw me hospitalised with excruciating abdominal pain on weekly basis, before having a laparoscopy in 2012. Despite endometriosis running in my family, it was always dismissed as an option. I was apparently too young; it took six years after my first hospitalisation, an endless amount of painkillers, countless ultrasounds and two surgeries before I had a diagnosis on paper. There is very little that can be done to control endometriosis, and although I’m lucky that my experience has been a cake walk in comparison to others, it takes over my life. So many people are quick to dismiss period pain as a natural part of their cycle. I think the strong stigmas surrounding menstruation lead to a complete lack of understanding of debilitating conditions like endometriosis. I am constantly being made to feel like I’m exaggerating or overreacting, which makes it a totally isolating and lonely struggle at times. Endometriosis is a real issue, and I hope that one day it will be treated as such.

– Charlotte, 20.

Periods are painful; cramps feel like contractions. My flow is very heavy with lots of tissue and clots. I get pain through my rectum and bladder, and some days it’s a struggle to get out of bed in the mornings. I bloat so much that I look five months pregnant (this lasts from ovulation through to the end of my period). It increases the pain in my back to a chronic back issue and I struggle to gain quality sleep because of the pain.

– Jenna. 28. 

 

During a routine cyst removal at the age of twenty, I was diagnosed with severe endometriosis. It was found on my uterus, colon, bladder and all the ligaments holding everything in place. They did a scrape down of as much as they could and ended up removing most of the ligaments. But nine months later the pain returned. I’ve been through many different treatments.

Periods for me are exhausting. They last 6-14 days, with the first four being severely heavy. I experience pain throughout my lower abdomen the entire time, with intense moments hitting like contractions. I’m usually doubled over in pain at least five times a day during the first few days. I usually can’t eat much without getting nauseous. Because my uterus is tipped backward and I have a bicornuate uterus (which seems to be commonly associated with endo), my entire period is painful in the lower back because of the pressure it puts on my spine. I add this because I don’t know if it was tipped before the ligaments were removed. The heavy and painful periods I’ve learned to deal with. However, the treatments are harder still because they include non-cycling hormones and lupron depot shots, which leave me without a cycle. This takes a huge toll on my emotional state and causes a great amount of weight gain. Emotionally it can also cause fertility issues from the endometriosis causing adhesions in the fallopian tube and on the ovaries.

– Maura, 31.

As a teenager, I was convinced the extreme pain I was experiencing was normal and it took me a while before I found out that no-one’s body should make you feel so out of it like mine did. Nor should it be all year round – day in, day out. After nearly two years of invasive, repetitive and unsympathetic hospital appointments and being shrugged off due to my age, I finally underwent my second laparoscopy which confirmed my endometriosis had returned on my left ovary.

Luckily, being younger, the cysts caused by this were removed, healed and I went a few years with relatively toned down pain. Despite feeling pretty much like I’d been beaten the shit out of from the belly button downwards, within four  days I started to feel like me again. For the first few days I really struggled to get up and walk and felt pretty emotional.

Endometriosis, though not curable yet, can certainly be managed if you are given the correct support and information. Mine is certainly not an extreme case and I am fully aware that I’ve been very lucky to get off as lightly as I did. I feel it is important to get the message out there in a hope that others might find it helpful should ever develop the disease.

Doctors need to start taking people with extremely painful periods more seriously. I’ve have so many examples of when my claims have been dismissed and I have repeatedly been told by doctors that if I ‘meddle’ with it too much, I could end up infertile. I’ve since been told that actually operations can improve your fertility and it certainly has helped me with the pain. This kind of reaction from doctors is too common and it needs to change.

– Sophie, 24.

Do you see a running theme here? People having to fight and push for a diagnosis. A massive thank you to the women who allowed me to share their stories, keep on fighting the good fight!

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7 Comments

  1. Cathy Glynn March 9, 2016 / 3:36 pm

    This is such a difficult condition to live with and it is good you are highlighting it for others x

  2. Sarah in Wonderland (@WonderlandBlogs) March 9, 2016 / 4:20 pm

    This was so helpful, I’m currently going through this process but my gyny is not helpful at all. I have all the symptoms and in agony, I keep getting told I have ‘painful periods’ but I know it’s so much more. Going to push more when I go back in June.

    Sarah <3

  3. Kaz & Ickle Pickle (@IcklePicklex) March 9, 2016 / 8:09 pm

    It is great that you are raising awareness of two very important subjects. I have never suffered thank goodness, my mum did though. Kaz x

  4. Sarah March 9, 2016 / 8:17 pm

    Aww sounds like a difficult condition 🙁 I’ve not heard of it before so thank you for making me aware. xx

  5. Emma White (@TheRealSupermum) March 9, 2016 / 8:37 pm

    oh wow I didn’t actually know about this although had heard of it we definitely need to share it more to raise awareness

  6. Anosa March 10, 2016 / 8:34 pm

    So sad and such a shame, I have a friend who was diagnosed with it and was told she couldn’t have kids and later problems progressed they had to remove both her ovaries so sad indeed

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