Endometriosis pain relief after a hysterectomy

Have you always wondered what your endometriosis pain will be like in the future? I have too. I’ve been trying to seek out women who are further along their endometriosis journey to find out how their pain has improved, changed, worsened or vanished completely.

I’m starting off with the story of a 40-year-old woman who has had a hysterectomy for endometriosis pain. I hope you’ll find her insight helpful.

Please help

I’m looking to interview women who have experienced pain relief following the natural menopause, if you’d like to share your experience (anonymously) on my website please get in touch by leaving a comment. Your email address will only be visible to me and I’ll get in touch with you privately.

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How to prepare for your endometriosis laparoscopy

I am not afraid, I was born to do this.

I’m expecting to go in for my third laparoscopy in the next few days. I know how scary the prospect of having a laparoscopy for endometriosis can be, so I thought since I’m about to go through the process again I’d share some of the knowledge that has helped me manage in the past.

This is just my personal experience, your experience with your hospital could be slightly different. Unfortunately there’s a real inconsistency with the information you can receive prior to this operation. So here’s what I’d recommend you do before and after your laparoscopy.

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Endometriosis UK information day report 2014

A plushy womb

Last Saturday I attended the yearly information day about endometriosis hosted by Endometriosis UK. The information day was an opportunity to learn more about the latest developments in endometriosis trearment and find out the latest advice from endometriosis consultants and patients.

As ever it was a neat opportunity to meet and talk to lots of other women with endometriosis. This event couldn’t have happened without Endometriosis UK, so if you were enable to come to this event, please consider coming along next year or supporting the charity through donation or membership.

Please note

I’ve written up an account of the day as completely as I can, just as I did for the 2013 information day and the 2012 information day. Naturally it doesn’t compare to actually being there.

I’ve had to paraphrase some of what the speakers said (I couldn’t always hear everything), so what is written here does not represent the views of the speakers or Endometriosis UK. I apologise for any inadvertent mistakes.

Always discuss any changes to your treatment plans with your doctor and consultant as they know the best treatment for your personal circumstances.

With that in mind, here’s what we learnt on the day.

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An interview on my experience of endometriosis diagnosis & treatment

My study area.

I was recently approached by a Journalist called Stela Todorovic who wanted to write a piece about endometriosis. I look forward to the piece, but I thought in the meantime you all might benefit from the answers I gave about what my diagnosis was like and the experience of being treated in the UK.

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I’m attending the Endometriosis UK information day 2014

My business card with contact details :)

Hi everyone,

Just a quick update to let you know that I’ll be attending this years Endometriosis information day in London. I’ll be doing my best to to write up a summary of the information discussed there as I did in 2012 and 2013.

It would be great to see some of you while I am there, so if you have visited my website (and found it helpful) or would like me to write something in particular for you come say hi.

These information days are crucial for finding out the latest treatment information about the treatment and care of endometriosis, and for meeting other women with this illness.

I’m a member of Endometriosis UK, and this yearly information day is run by them so if you can’t make it this year, I really recommend supporting them through membership, or looking at the other ways you can support this amazing charity.

Watch this space for this years information day update, and thanks to Endometriosis UK for hosting such a fantastic support day.

Q&A on endometriosis at Bristol’s St Michael’s hospital

Notice board at St Michael'sLast week I had the pleasure of attending a Bristol Endometriosis UK support group meeting where the group leaders had arranged a Q&A session with the endometriosis team from St Michael’s Hospital in Bristol. St Michael’s is one of the 30 BSGE accredited endometriosis hospitals, which works specifically on women with endometriosis and support them and their partners with every aspect of the disease using a cross-discipline team.

It was a really interesting evening, the group was supportive and informative, and it was great to be in a specialist endometriosis centre with all the support that location offers. I thought you’d all benefit from reading the information shared at this event.

I’ve made the notes where I can, but I wasn’t able to hear some of what was discussed. So with that in mind, this update doesn’t totally represent the views of the St Michael team or the audience. I have had to paraphrase some of what they said. Some of the questions asked, weren’t actually questions, so I’ve taken a little poetic licence to make them questions so they make sense to you.

Like anything you read online everything is best discussed with your doctor and your consultant as they can see your medical history and your case file, and what may or may not help you.

With all of that in mind, here’s what we heard.

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How to learn a new language while you have a long term illness

I am now several several years into living with long term illness. I’ve come to accept it’s presence in my life, but this has come at the cost of losing a little bit of my independence and freedom. I tried not to be afraid of the pain, but it’s clear that it has affected my ability to live as normal a life as I once did.

My pain started to manifest itself in different ways, I grew more tired, and less able to concentrate and retain things in my short term memory.

As a result I became less sure of my ability to learn new things, I didn’t think I could do something new and complex, because the pain would get in the way, and tiredness would make it hard to focus, and how could I fit it around illness and inactivity and an already busy life.

An then I thought are those actually obstacles for my learning, or am I actually coming up with excuses for why I don’t get on with it? Haven’t I always had excuses for not trying something new? Was illness just a bigger, newer excuse?

So I started reading about learning Japanese, and before I knew it was I was starting to read and write Japanese, I surpassed my own expectations, because instead of wondering why I couldn’t do something, I looked harder at what I could still do.

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What would you improve about your endometriosis treatment?

Hi everyone.

In a weeks time I have a meeting with a number of people from the NHS to talk about what living with endometriosis is like, and what I’d potentially like to see improved about endometriosis care in my county.

Nothing may come of it, but it’s the first real chance I will have to influence some change in regards to how endometriosis is treated in my local area, who knows where it could lead to.

It got me thinking about how this isn’t just about my perspective, I want to adequately represent what it’s like to live with this disease. I don’t just want to talk about how it’s important issue in my area, but a national and international problem that some people in the medical profession are collectively underestimating.

If you could change one thing about how your endometriosis is treated, what would it be? Here are some ideas to get you started.

  • Was the information you received up to and after your diagnosis appropriate?
  • Have you received any long-term support or care?
  • Do you routinely see someone (such as a pain management team or pain clinic) about your pain?
  • Does your medication adequately help the pain?
  • Have you been told about pain management and pacing?
  • Do you feel endometriosis is taken seriously by the people who treat you?
  • Have you ever been offered counselling or sexual therapy?
  • Have you been given any physical information (such as leaflets, booklets, or website links) by the NHS or other health service?
  • Were you discharged from your consultant after your laparoscopies?
  • How long did it take for your endometriosis to be diagnosed? Are you still waiting?
  • Did you know what endometriosis was before you were diagnosed?
  • Was your pain ever played down when you sought help?

Please share your story and send this to anyone you feel would want to raise some issues.

The problem with “I hope you feel better”

I’m starting to dread these words almost as much as the question “how are you?”. It normally comes not long after I’ve explained how I have a long term illness, how it effects my life and how it’s not likely to improve.

After someone’s suggested something that might help. People tend to wish me on my way with the sentiment “I hope you feel better”.

I know what the person is trying to say, they’re trying to empathise with me and be hopeful about some future improvement in my daily experience.

The problem is though this sentiment is counter initiative to the understanding I have of my illness. Chronic illness is unlikely to improve and can only really be managed by daily management and hardwork. It rarely gives us a break and you rarely experience that lovely, rising sensation of feeling better, of something lifting away.

Despite what the person says, when someone says this to me part of me always feels like they haven’t really listened.

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Why don’t more women have smear tests? Because they really, really hurt

Last month, I replied to a tweet by @talkhealth asking why more women didn’t take up the offer of free cervical smear tests.

I pointed out that there was a very simple reason why one in five women don’t go for a regular smear.

It’s because smear tests can be immensely painful, especially if you have something like endometriosis. I expect that a lot of women are suffering in silence, or find the very idea so painful (due to past experience), they can’t bring themselves to even go.

Having personal experience of truly agonising smear tests that I’ve wept through, I really can’t blame them.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability