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Endometriosis Awareness (Time of the) Month


Member4445

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I've written coughcomplainedcough about this a lot recently. But I've never really explained what Endometriosis is. This disease I have that will eventually cause my liver to fail, to need a colostomy bag and catheter, if I don't get the surgery I need. I've been thinking of what I, as a sufferer, would like the world to know about this condition and finally put something together. 

 

*Note: I acknowledge that not all people with this condition will identify as female, it's just a lot easier to write about from this angle*

Wtf is Endometriosis?

This is a disease where the cells that make up the endometrial lining of the uterus are found elsewhere in the body. Most commonly, it is found in the pelvic cavity including on the ureters (the tubes running from the kidney to the bladder) and the bowel. However, in more extensive cases, it can be found elsewhere such as on the liver and skin, in the lungs and brain, and around the lining protecting the heart. 

 

These cells form implants on the various bodily structures ranging from superficial implants, to deep infiltrating implants ( 5+mm into the structure) and nodules. On the ovaries, it can form Endometriomas (or chocolate cysts, named as such due to the old blood inside them resembling melted chocolate). These implants can form their own blood supply and grow their own nerves. They can also produce Estrogen independently of the ovaries. 

 

These implants then shed and reform cyclically at the same time as the woman's menstrual cycle. However, some women feel pain through their whole cycle. As there is nowhere for this blood to leave the body (unlike from the uterus), scar tissue and adhesions can form. These adhesions can stick organs together which causes further pain. My right ovary is currently attached to my bowel and appendix, it's bloody hurts! Specifically, it feels like every time I move, something is pulling in there. In extreme cases, it can cause Frozen Pelvis Syndrome where your uterus, ovaries, bowel and other structures and all fused together unable to move freely. 

 

Who gets Endometriosis?

1 in 10 women have it. It's the second most common gynaecological condition. Despite this doctors only receive 1 PowerPoint slide on it in medical school. It takes, on average 7 years to diagnose. 80% of women receiving fertility treatment have Endo. Yet, only 30-50% of Endo sufferers have fertility problems. The more severe it is, the more likely you are to have fertility issues. These issues are usually caused by adhesions blocking the path of the egg down the Fallopian tube. Symptoms and severity are not correlated. A woman with severe Endo may only be diagnosed when investigating fertility issues while a woman with superficial implants may be in great pain. I got a bad drawer, mine is severe and painful. A lot of women are unable to work due to the severity of their symptoms. 

 

There are 3 known cases of men being diagnosed. 2 of these were elderly gentlemen who were on Estrogen to help combat prostate cancer. 1 was a 27 year old male whom it occurred spontaneously in. 

 

What causes Endometriosis?

Current research suggests it develops whilst female foetuses are growing in the womb. It has been found in 10% of female stillborn babies. It also occurs in 10% of adult females. Those are pretty damning statistics. 

 

What are the Symptoms?

These symptoms can occur at any time during your cycle - be on the lookout for any that occur outside of your period as that is a telltale sign. 

 

* Pain - shittonnes of pain. For me, I've likened it to being struck repeatedly in the stomach by lightening. I pass out every month. If you're ever unlucky enough to have gallstones, it's a breeze compared to Endo pain. Then there's the psychological effect of knowing you're going to have to go through it all over again. Chronic pain has long lasting effects such as misfiring pain signals. 

 

* Heavy periods - Soaking through pads and waking up to your bed looking like a murder scene, pretty standard. It's also a symptom of Adenomyosis (Endo's sister condition) especially combined with 50p sized clots. Passing old dark brown blood is another sign. 

 

* Bowel problems - IBS symptoms and passing blood in the stool at any time of the month are Endo symptoms, especially if you have it on the bowel. 

 

* Chronic Fatigue - 80% of women with Endo also have chronic fatigue. 

 

* Painful sex and urination

 

* Breathing difficulties if it is on your lungs. 

 

* Shooting pains in your rectum and hoohaa. Feels like a knifes been shoved up there. 

 

* Depression and weight gain. Nausea, bloating. All the fun stuff.

 

How is Endo Treated?

Excision surgery is the gold standard approach. This involves using heat or lazor to cut the implants out making sure healthy tissue is cut into to get rid of the nerve supply. Unfortunately very few Gyne's specialise in this type of surgery and it's insanely difficult to access. In the U.K., guidelines state only severe cases should be referred to specialists. Only 10% of women will have Endo return within 5 years using this method. If Endo is found on the bowel, ureters, outside the pelvic cavity, other specialist surgeons must also be present such as Urologists, Cardiothorasic surgeons etc. so even less surgeons specialize in these. 

 

Ablation is the most common surgical method. This involves burning the implants. However, because it only burns the top of the implant off, the surgeon can't be sure they have removed it all. It returns in up to 70% of patients within 5 years. 

 

Contraceptives can be used to prevent/slow down regrowth. Particularly the mirena coil, depo provera injection and combined pill. 

 

Some consultants push Lupron as a cure when it causes horrendous side effects. 

 

Endometriosis Myths

"A hysterectomy can cure Endometriosis" - FACT: A hysterectomy can only cure Adenomyosis. The entire point of Endo is that it grows outside the uterus and produces its own supply of Estrogen. GPs still push this as a cure. It may help some women but this is purely coincidental. 

 

"Endometriosis is a form of cancer" - FACT: It is a benign condition that can spread aggressively. However Endometrial cancer does exist. 

 

"You have Endometriosis your whole life." - FACT while that may be so, symptoms usually disappear after the menopause. 

 

"Periods are supposed to be painful" - FACT Some cramping and heavy bleeding is normal but not to the extent that it impacts your quality of life. Especially fainting or bleeding for longer than 8 days. 

 

"Once you have surgery Endometriosis is gone." - FACT The pain may be gone but the fatigue and bloating usually stays. Some surgeries are not successful too. The first 3 periods after surgery will be horrific, that's normal. In most patients, the implants will return. We go on the pill to help slow it down. 

 

"You can only have Endometriosis over the age of 30 and having babies young reduces the risk." FACT - More and more teenagers and young women are being diagnosed as more doctors begin to open their minds. Previously, we have been told our symptoms are normal or it's all in our heads. This is incorrect. Women have had babies early still get Endometriosis. It's all just myths brought on by a disease that doctors do not want to understand. 

 

If you have these symptoms or illness, you aren't alone. Although it can feel that way sometimes. Only with awareness will Endometriosis receive the recognition it deserves from the medical world. 

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Anthracite_Impreza

Thank you for that frank and honest post, it's a travesty it's not taken seriously by just about anyone.

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11 minutes ago, Anthracite_Impreza said:

Thank you for that frank and honest post, it's a travesty it's not taken seriously by just about anyone.

Thanks :) On average, it takes 7 years to diagnose from the onset of symptoms. My onset of severe symptoms was at 11 years old. I saw doctor after doctor begging for an exams. They all told me it was in my head and everything was normal. I was 24 by the time a doctor took me seriously and asked for ultrasound. Endo can't be found on an ultrasound or MRI as the cells are flat, so it was useless but the sonographer referred me to a surgeon herself as she didn't trust my GP to believe my symptoms were disproportionate to the lack of evidence suggesting anything was wrong. I was diagnosed a year after that ultrasound. 

 

No bloodtest can diagnose Endometriosis. Only histology of one of the implants that was removed provides a definite diagnosis. 

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Moved from Off-A to PPS 

Ricki, Off-A Mod

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Pretend this is green. 

 

The comment about tagging has been noted. Can we return to the original topic now, please. Skycaptain moderator PPS 

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Nobody really tends to focus on the psychological effects of Endometriosis. As a chronic illness/pain, it's more likely to lead to depression and suicide.

 

Ciri's Mental Health Experience 

I was 14 the first time I tried to take my own life due to this illness, it wasn't the last time either. The level of pain I was in combined with the lack of acknowledgement from medical professionals then knowing that I would have to go through it all over again, really took a toll. At that age, my monthly cycles were roughly 13 days long, I was getting a 3 day break. Still nothing from doctors. I now have PTSD from the sheer repeat of pain every month. Despite knowing I was better, I was still getting flashbacks with every cramp. Flashbacks to the past 25 years where I used to pass out on the bathroom floor and pray to every deity that potentially exists to kill me now. 



 

I've been having crying fits because I'm so scared of going back there.

 

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Things they don't tell you about Endometriosis. 

 

Endo Belly! 

 

It can cause exteme bloating which is painful. This is usually reduced by looking at the 'Endo Diet' and trying to find what foods you need to cut out. Symptoms can be caused by Endometriosis on the bowel itself or adhesions/scar tissue effecting the bowel. 

 

Example: This is a side long photo. My tummy usually looks completely flat in this dress. Here it's making me look about 8 months pregnant. 

IMG_2212.jpg

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Thanks for this, I knew about Endometriosis but have never heard about Adenomyosis, I've done some reading now. I'm currently suffering from incredibly heavy periods, terrible pain and clotting, in my case it may be the onset of early menopause (I'm 38) which runs in my family, but I think I might ask for some investigation. When this started I was sent for ultrasound in case it was Endometriosis, I didn't realise this doesn't detect it. I am already on the pill but it doesn't seem to help in my bleed week and I had to take it back to back for months as I became severely anemic. I'm hoping to start taking the pill so that I only bleed once every three months as, if I carry on like this, I will be permanently anemic.

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ChillaKilla

Endo sufferer here and whoo boy, it's a doozy. I've been on at least 7 different hormonal contraceptives in attempt to mitigate symptoms and none of them have lasted more than 3 months save for the most recent treatment; a Mirena IUD. On top of that, I'm receiving subcutaneous testosterone injections every other week, and even with that and the Mirena I'm still getting breakthrough bleeding. It's not good.

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  • 2 weeks later...
Member4445
On 23/06/2017 at 3:31 PM, Amber79 said:

Thanks for this, I knew about Endometriosis but have never heard about Adenomyosis, I've done some reading now. I'm currently suffering from incredibly heavy periods, terrible pain and clotting, in my case it may be the onset of early menopause (I'm 38) which runs in my family, but I think I might ask for some investigation. When this started I was sent for ultrasound in case it was Endometriosis, I didn't realise this doesn't detect it. I am already on the pill but it doesn't seem to help in my bleed week and I had to take it back to back for months as I became severely anemic. I'm hoping to start taking the pill so that I only bleed once every three months as, if I carry on like this, I will be permanently anemic.

Ultrasounds only detect Endometriosis in a small number of the population. Usually this is when that person has fluidic nodules or cysts on their ovaries. The only way to get a definite diagnosis is to have a laproscopy, for some of the Endo to be excised and then sent to histology for analysis. If your doctor offers you a hysterectomy as a cure, this may not work unless any Endometriosis is excised at the same time. The cells are flat and don't create enough mass for ultrasound waves to pick up.

 

On 23/06/2017 at 5:43 PM, ChillaKilla said:

Endo sufferer here and whoo boy, it's a doozy. I've been on at least 7 different hormonal contraceptives in attempt to mitigate symptoms and none of them have lasted more than 3 months save for the most recent treatment; a Mirena IUD. On top of that, I'm receiving subcutaneous testosterone injections every other week, and even with that and the Mirena I'm still getting breakthrough bleeding. It's not good.

Have you managed to be referred to a surgeon? That sounds quite bad. My experience with the Mirena is that my GP tried to get me to sign a piece of paper saying I didn't want any treatment for anything they might find. I refused to have the Mirena as I have a deep seated phobia of parasites, when I'm in the middle of a panic, I might try to claw it out of myself. 

 

------

 

My next post will be explaining how damn hard it is to get proper treatment and care.

 

Im in a lucky position where I won an appeal to be sent across the country to a private hospital to see one of 5 specialists in the UK. My appointment is the 16th August :D:D Happy Happy.

 

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  • 1 month later...

I have my first appointment with a specialist today. On my way there by car. I've been anxious about this for a while and only just realized why. 

 

I don't make myself vulnerable to people. 

 

Ever. 

 

You've probably noticed I'm a great big ball of rage. It's actually a front because I don't want people to see how hurt I am. 

 

Even physical pain, I don't let anybody see I'm in pain. I don't tell people anything. If I'm going to pass out, I lock myself in a room so nobody can see me like that. I confuse the heck out of doctors because not even a small flash of pain crosses my face. 

 

How am I supposed to tell a stranger that I can't take much more of the pain I'm in? That I've been so close to ending it? That even if he manages to get rid of it, I'll be analysing every single twinge I get worrying it's going to return?

 

I guess I'll have to. 

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