Ten tips for living well with endometriosis from the EUK Information Day.

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

Image result for endometriosis banner long

Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.

2- Specialist nurses can be a valuable asset in your journey.
If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to  advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.

3- You are the CEO of your body.
When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.

4- Exercise is your friend.
It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.

5- Endometriosis is a highly individual disease.
There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.

6- If you don’t ask, you don’t get.
Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.

7- Progress is being made to improve the patient journey….
During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.

8- …But conversely, lots of the old myths still exist!
Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.

9- Endometriosis is a life changing illness.
Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.

10- There is hope.
There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.

I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!

Love,
Claire
xxx

The joy of side-effects: How endometriosis killed my sex life.

Like many women with endometriosis, I’m living in a little place that I like to call ‘side-effect city’. Right now it’s because I am taking the oral contraceptive pill to help  manage my pain while I wait for my appointment in May with an endometriosis specialist. Being in side-effect city isn’t always easy, but it’s a hell of a lot better than residing in ‘incapacitation town’ where I was being held prisoner before I began taking medication. That place was bad, very bad. I’m never going back there, so I resign myself to living in a land where side-effects will play a long term role in my life. I’ve signed up to this voluntarily, so I can’t complain right?! WRONG- you know how I love to complain and over share. So, here we go…

One thing that has been bothering me about taking the contraceptive pill is that it kills my libido. Kills it stone cold dead. It’s actually crazy how massive this effect is. In the space of a few weeks of pill popping I go from this…

Arousedto this…

No Touchy

Seriously, being touched on the arm makes me want to throw up, never mind anything more than that. It’s really weird and not ideal. I’m getting married in a few weeks to the most gorgeous, lovely, and understanding man. He deserves somebody who isn’t just going through the motions and pretending to enjoy it when things happen. Also, I’m not the kind of girl who is comfortable with pretending and doing things she is uncomfortable with. I’m pathelogically honest when it comes to matters of the heart. So lovely man is going without increasingly often- which he seems fine about, but I still feel bad. Also, we’re going to Hawaii on our honeymoon. I want to feel like a smoldering goddess, not somebody who would generally rather do a massive mountain of ironing (this actually happened) than be intimate with the love of her life. We were doing it the other day and I was fully engaged in thinking about replacing the broken screen wash mechanism on my car. I think he could tell I wasn’t that into the moment, and my ‘oh yeah, high on life right now’ face has never convinced anyone of anything in the entire history of time. Things didn’t use to be this way, and that makes me sad.

A little bit of searching showed me that I’m not alone with this problem, or (slightly more importantly) imagining it.  Numerous research papers (e.g. see here) and news articles (e.g. see here) have explored this topic and come to the conclusion that the pill can affect a woman’s libido. It’s not surprising really since it messing around with the delicate balance of your hormones.

But I feel like I can’t win. If I stay on the pill, I have no desire to be intimate, and if I come off it I’m too busy lying on the floor in agony begging people to kill me to even think about such things. **Sigh**

And the thing is, I know this little tale is trivial compared to what many women with endometriosis go through when it comes to side effects from their medication. Some of the known side-effects from recommended endometriosis medications are actually horrific, ranging from loss of bone density to severe hot flushes. I always feel really bad for the people I have met at my support group or online who are suffering in this way when all they want is to tackle their endometriosis and feel better.It’s not OK to have to be forced into compromising your quality of life and relationships in order to be able to live a life without excruciating pain.

I just don't understand how this is acceptable.

I just don’t understand how this is acceptable.

I’m aware that for myself too the ‘best’ of this is yet to come, so I should enjoy this period of time before my appointment as much as I can. It make’s me so angry that we all have to go through this because there is a deficit of effective treatment options. Worrying about side-effects also put me off having a Mirena coil fitted- I wasn’t sure I was in a state to handle a potential six months ‘settling in’ period which I’ve heard can be pretty awful.  But I might leave the full story of that for another post.

I’m interested to hear what side-effects you’ve experienced from endometriosis treatments and medication. How do you deal with these? Tips, thoughts, and advice are very welcome, as ever 🙂

Love,
Claire
xxx