Endo What?

Two weeks ago a man shaved off my pubic hair in my sleep. Well, that’s not strictly true. I wasn’t asleep, I was unconscious.

Rather than being yet another inebriated incident to add to my litany of shame, said shaving occurred during an operation to treat the disease endometriosis. I’d tell you not to google it and spare you the gruesome photographs but I want you to google it, because endometriosis is a disease that affects 1 in 10 women. That is almost as many as breast cancer and I am pretty sure that most people reading this will have absolutely no idea what it is.

In brief(s), endometriosis is a gynaecological condition and the primary symptom is chronic pain. Endometrial tissue that should stay in the uterus decides to go off-road and implants itself at various points in the abdominal cavity. These implants grow and thicken along with the lining of the uterus in accordance with the woman’s menstrual cycle and when a period starts, they break down and bleed too. There is no way for this tissue to leave the body, which leads to pain and inflammation. Other symptoms can include nausea, fatigue, severe bloating, back/leg pain and pain during sex. It can also lead to problems with fertility and increase the risk of miscarriage if a woman is able to conceive.

Endometriosis is not an infection, it is not contagious and it is not a sexually transmitted disease. No definitive cause has been identified and there is no cure. Fun, huh?

In 2007, after years of complaining to doctors about the symptoms I was experiencing (and had been experiencing since my teens) I had my first laparoscopy. Endometriosis is not visible on scans and cannot be identified with blood tests. The only way to confirm diagnosis is through surgery. Diagnostic laparoscopy is quite a tidy business and involves two small incisions – one in the belly button, to insert a camera and to pump carbon dioxide in to separate the abdominal wall from the internal organs. A second incision is made just below the knicker-line (cue shaving) and what I like to refer to as a ‘poking device’ is used to allow doctors to move the internal organs around to hunt for the demon endo. The surgeon struck somewhat rubbish gold and confirmed that I had endometriosis happily growing behind my uterus.

ScarsP

I had my second operation earlier this month following a difficult ten months during which my symptoms worsened considerably. This time around the operation involved laparoscopy with the added bonus of diathermy – the removal of rogue endometrial tissue by laser treatment. As well as shiny new belly button and knicker-line scars, I also got two (distressingly unsymmetrical) incisions on each side of my lower abdomen – one where the laser was put in and another where a cooling treatment was used to clear the smoke and stop it all overheating in there (I quite liked the idea that someone had to blow into a straw for the whole time but I was assured this wasn’t the case. Sad face). After the operation, the surgeon said that the endometriosis had spread to several other places in my pelvis and that they had lasered the hell out of it. Then they gave me some lovely morphine and…well, who knows what happened after that.

Treatment options for endometriosis are limited – hormone drugs that place your body in a state of pseudo-pregnancy to deny the endo implants the menstrual hormones that they need to grow and allow them to ‘die off’ temporarily, steroid nasal sprays that do something similar and helpfully also reduce bone density, a variety of surgical procedures to cut and burn away the tissue (which in most cases will grow back and, to add insult to injury, seems to flourish on scar tissue) and, that trusty old cure-all, hysterectomy. Except if the implants have grown on tissue that is not on the reproductive organs, such as the stomach, intestines, etc, then this doesn’t work either. Some women have found that symptoms are reduced after childbirth (if they are able to get pregnant) but, personally, I think that a baby is a pretty hefty commitment to a painkiller. In my own case, after some horrific experiences with medication, the things that have worked best so far (combined with painkillers) are the natural options – a diet and supplement regime developed specifically to work against endometriosis (link to Dian Shepperson Mills’ brilliant book on this below) and as much regular exercise as the pain permits. However, whilst these things help they are not a cure and they have varying levels of success depending on the severity of the disease.

Scars close

So, why do so few people know about endometriosis? Why are we still fighting in the dark?

I think the fundamental issue is that girls are told from a young age that periods are painful. It hurts, kid – take your painkillers, strap on a hot water bottle and get on with it. Yet, there is no gage given for menstrual pain. Yes, there is likely to be some discomfort and cramping, what with all those muscles contacting to push blood and tissue out of your womb once a month, but if you are crippled by agony and unable to function during your period that is not normal. If you are vomiting or passing out from the pain or can’t go to work/school, that is not normal. If you have pain at ovulation or at any other stage during your cycle when you are not menstruating, that isn’t normal either. These are warning signs that something could be wrong and should be monitored and discussed with a doctor.

Unfortunately, there can be reluctance by some GPs to take pelvic pain seriously and also to give credit to female patients for knowing their own bodies, contributing to a diagnosis time for endometriosis of anything from five to ten years. When I moved house in 2005 I found a list of symptoms that I had taken to a doctor about six years beforehand because I suspected that I had endometriosis. He dismissed it without discussion – ‘No, it’s not that. You’d know if you had it.’ Yeah, thanks doc. I did know.

Another obstacle is that people just still don’t feel comfortable talking about things like this. That old, embarrassed ‘Christ! Women’s problems!’ attitude. I mean, who wants to listen to people talking about periods?

I do.

Because this isn’t just ‘talking about periods’. It is about raising awareness of a disease that is under-researched, underfunded and that ruins lives, and we all need to get over the stigma of talking about it. It isn’t just women that need to be talking about endometriosis – men need to be made aware of it too, as this is a disease that can seriously affect the lives of the women that they love. Girls need to be taught from puberty what is healthy for their bodies and be given the confidence to assert themselves when they are concerned, in order to get the treatment that they deserve. After the dismissive GP debacle I vowed never to be pushed around again when it comes to my health and I haven’t been. This is a tough disease to nail down but diagnosis starts with standing your ground.

Its-ok-to-talk-period-poster2

Next week is Endometriosis Awareness Week (March 3rd – 9th). Endometriosis UK will be organising various activities, online support groups and drop-in meetings to raise awareness and promote discussion. Information can be found here.

The first Million Woman March will also take place on 13th March. This is an international event involving participants from 53 countries. It is not a sponsorship event, instead it is about raising public awareness and showing solidarity. The London Event will take place in Kensington Gardens. If you have the disease, know someone who does or just feel like getting involved then you can register to join the march here.

At the moment I am working through the sinking feeling that this operation may not have actually made any difference to my condition. There has been no discernable change in my symptoms. I have had pretty much constant, painful cramps since the surgery, along with the usual sudden (and delightful) ‘endobelly’ inflation, which is debilitating both mentally and physically.

Bloat

What if nothing changes? That is hard for me to think about and will be even harder to deal with. At the same time, I keep reminding myself that, whilst the external damage is minimal, there has been some pretty hardcore internal frying which will take longer to heal and so I won’t know for sure how much has changed for another couple of months or so. All I can do is wait, take the painkillers and try to take the best possible care of my health.

(I am told that this does NOT involve drinking copious amounts of gin. Furious).

Useful links:

Endometriosis UK: The leading UK charity dedicated to providing information on endometriosis and support for those affected by endometriosis.

The Million Woman March for Endometriosis: Information and resources about this international event.

Endometriosis: A Key to Healing and Fertility through Nutrition: Excellent book by Dian Shepperson Mills offering safe and practical nutritional and healthcare advice.

Celebrities with endometriosis: via Endometriosis: My Life with You blog.

This post is also published here: The Huffington Post UK.

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21 thoughts on “Endo What?

  1. Katy says:

    Thank you for sharing – I had never heard of this before, so you’ve raised awareness by at least one person!

  2. Sheryl says:

    After many many years of suffering with Endo, (I always knew that lying on the floor crying was not a normal way to spend the first few days of your period) I started tricycling my pills, which at least allowed me a break from the pain.. The other thing that has made a huge difference to me has been taking magnesium supplements… it seemed to tone down the cramping feeling dramatically. Endo made my life a misery when i was a teenager, and it seems that we are no further along in understanding this disease now (some 15 years later) than we were then, surely its time for this to change?
    Endo seems to affect people very differently and what works for one person may not work for another… my fingers are crossed for you that the surgery makes a difference!

  3. Carolyn says:

    Thanks for your post! I received a diagnosis from my ob/gyn last year after years of discomfort. She only did an exam by hand but could feel the inflammation along my cervix where she believes I have endo tissue and was complaining of severe pain. You mentioned endo-belly and I have experienced this randomly and irregularly for years but always told myself it must be related to my eating. Glad to know I’m not alone here! Is yours random or have you been able to pinpoint a pattern?

    • Hi Carolyn. The endo-belly is maddening! I wasn’t sure what was happening to begin with. I started monitoring it and soon realised that it hits on day 14 of my cycle – when ovulation starts – and then continues on and off until I get my period. I tend to get some relief from it then up until the next time I ovulate. It’s worth tracking yours to see if you can establish a pattern as I am sure, like everything endo-related, it probably varies for everyone! x

  4. I laughed out loud at your explanation “In brief(s)” and endo doesn’t usually make me laugh so well done! I enjoyed that 🙂 Endo is a crappy crappy thing but raising awareness and talking about it is soooooo important!

  5. Katie Soze says:

    Don’t know what to say but you ladies are mad brave. My teenaged period pain was faint/vomit inducing, I just used to curl up and cry! – and that was normal and healthy, so what you’re going through must be ten times worse. If there is anything I can do, please let me know.

  6. Grace says:

    Hi Emma,

    An endo friend of mine shared your article on Facebook and so have I. It’s so hard to find articles about endo which don’t feel the need to have a “happy ending” where everything is magically fine. I think you’ve successfully navigated the fine line between false optimism and doom & gloom. Anyway, I just wanted to write to say that I had excision surgery last May and had a tough few weeks recovering – my pain was worse than ever for the first 2 months. But by august, I’d stopped taking opiates and managed with NSAIDs and while I can’t say I’m 100% pain free, I am SO much better than I was and really feel the surgery has given me my life back, if only for now. So hang in there, the road to recovery isn’t quick or easy but I really hope it’s worth it for you.

    • Hi Grace,

      Thanks so much for reading and sharing the article, much appreciated. Wanted to write about it as honestly as I could and, like you say, there’s no easy way to a happy ending with this. I’ve read a lot of positive things about excision surgery so will definitely be keeping this in mind for the future. Glad it has given you such huge relief – long may it last! Thanks x

  7. Jessica says:

    Look into seeing an excision specialist. Ablation leaves the endo “root” still inside you and roughly 85% of all endo lasered off will return with a added “bonus” scar tissue. Excision surguery with a specialist leaves less then a 5% chance of endo returnig in the same spot and litte to no added scar tissue. Also allows for more downtime between surgeries.

    • Hi Jessica,

      I found out about excision surgery late last year. Definitely something to discuss at my follow up appointment at the hospital in a few weeks and to keep in mind for the future. Thank you x

  8. Jenna Douglas says:

    I suffered for years without treatment, then had my first laparoscopy in July 2011 which removed endo. After healing, I had about 8 months of no pain, only for it to return with a vengeance, after another laparoscopy there was nothing to be found. I was then treated for three months with microgynon and fingers crossed have had no problems since, I’m now undergoing my second round of IVF after a miscarriage in November, and I’m hoping for good news. The word definitely needs to be spread about endometriosis as it is not well-known at all.

  9. maria says:

    Thank you for sharing this much needed information for both women and men. Luckily I had my children before any real damage occurred but most of my adult life I’ve endured pain not unlike a mini-labour just about every month. I’m about to enter my menopause and not sure what to expect but to say I’ll be glad to get my periods over and done with, is an understatement.!

  10. raishimi33 says:

    You write unique, thorough and well-researched blog entries. Helpful, useful, entertaining by turns. What more could an audience ask for?

  11. Tiffany says:

    Thank you so much for sharing! I will be having my laparoscopy done March 2 in hopes to resolve the unending pain I have been experiencing. I also have had cramps around ovulation, but as of lately I cramp almost all of the time. Excited to kick of Endometriosis Awareness Week hopefully getting rid of mine for the time being! It’s nice to know that other women are fighting this battle alongside me. Thanks for the information and pictures. Hope all has been well since you posted!

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