*CALLING ALL ENDO SUFFERERS* What do you wish you'd known that you know now? (Endometriosis/ treatments / diagnosis)

I’m a writer working on a piece about endometriosis (as someone who has been diagnosed and suffering for 15 years) and wanted to hear from others on what advice you wish you’d known in the early days/ pre or post diagnosis that you know now? In my experience sharing our coping strategies is a really vital tool in managing this disease, and because it affects us all so differently, other experiences are really important! I look forward to hearing from you! Thanks!

[jjeemm]

Hi NoraLily

Thanks for your post. Yes, I wish I'd known a whole host of things before I was finally diagnosed this year via a laparoscopy. Here's a list of things I've thought of...no doubt there are more....

I really wish:

1. I'd even heard of the words 'endometriosis' and 'adenomyosis'...there's such little information out there...no pamphlets/leaflets or posters in GP surgeries/healthcare centres or even in hospitals on gynae wards. I was totally ignorant of these diseases for most of my life (I'm 49 now).

2. I hadn't placed so much faith my GPs/'so-called' endo experts to get my diagnosis right or expected medics to offer any kind of helpful advice.

3. I'd tried to find out SO MUCH earlier what might be causing my symptoms and started to research my problems years ago.

4. I'd pushed harder for better diagnoses, rather than accepting that I must just have constipation/wind, etc., etc....even though I knew there was something seriously wrong with me.

5. I'd been given advice about changing my diet (avoiding inflammatory food and phytoestrogens) and taking various supplements YEARS AGO!!! I'm convinced that if I'd had access to this information I'd be in better shape now than I am.

6. I'd appreciated that waiting times for surgery to treat endometriosis on the NHS are ridiculously long.

7. I'd been told MUCH SOONER that the only way you can be definitively diagnosed with endometriosis is via a laparoscopy.

8. I'd been offered some sort of hormone treatment YEARS AGO!

9. Someone had bothered to tell me about this forum and that advice and support for endo sufferers IS available.

10. It's a very, very common disease...apparently it's as common as diabetes amongst women (why doesn't anyone seem to know anything about it??!!).

11. Someone had bothered to offer me pain relief back in 2014 when I was suffering excruciating pain.

12. I'd been more forceful in terms of seeking treatment and hadn't accepted that my pain was normal and I mustn't make a fuss.

13. I'd known more about PALS and that they can be really helpful in liaising between patients and hospital staff when there are communication break-downs.

As I said, I'm sure there are more points I could add to the list!

I really do hope that as a writer and fellow sufferer you can help spread the word about how very poorly endo sufferers are dealt with in general by the medical profession...How so many of us are given wrong diagnoses, treated with contempt and not given any kind of treatment FOR YEARS!!!! This not only can have a hugely detrimental impact on our physical well-being but can also cause enormous psychological damage...the disease can truly take away the ability to live any kind of normal life and leads to feelings of complete despair and desperation. This really does needs to change!!!!

Anyway, thank you for asking for our opinions and thank you for spreading the word. Wish you the best of luck writing your piece...please do share it with us when it's finished.

All the best

[Hidden in reply to jjeemm]

thank you for your very thoughtful reply, it's so useful having insight into other's experiences. I'm so sorry you've had such a difficult and lonely journey- but so pleased you have found solace on here eventually. I will share with all when it's finished of course- thanks again!

if you know others on here who might want to share their experience please direct them to this feed- the more we talk the more people will have to listen!

thanks

[jjeemm in reply to Hidden]

Hi NoraLily

Very many thanks for your reply...yes, I do hope my wish-list will prove useful for your article and yes, I do hope others will also share their experiences....I totally agree with you - the more we talk about endometriosis, the greater the chance of being heard!

All the best with the writing

[123happym]

I second most of jjeemm's points

It's hard to strike a balance between being informed and reading so much that it takes over everything (pain/discomfort already take enough!). Trying to keep a sense of humour and some balance.

When I was first diagnosed with mild endo I should have been told that it could get worse, I thought it would stay that way.

Pregnancy even a failed one can reduce endo, though doesn't cure, it comes back! If I had been warned it comes back I could have taken action sooner.

A good balanced diet really helps and while exercise can be hard, gentle exercise really helps.

I was told by a friend to avoid tampons to help the blood flow, Chinese medicine. Not sure about the blood flow but it really helped my pain levels just using pads. Felt messier but made such a difference worth it.

Wheat bags are brilliant! They can be moulded to you and really help me sleep. Though try to use so that they fall to the side, no fun waking up on it later!

anything anti inflammatory is generally a good idea.

Green tea with mint is good, tea and coffee to be avoided.

The symptoms of endo on diaphragm, this is where my oldest endo is. The need for surgeons to check here, though access limited by liver in normal diagnostic lap.

Plus overall symptom awareness.

Also to be aware of adenomyosis, separate from endo but can have both.

To reach out for support rather than keeping quiet/being brave.

That consistent painful periods and heavy bleeding are signs not to ignore or that you have to accept as "women's problems".

Good luck with the article.

[Dee3e3e]

I wish I knew that endometriosis didn't just mean heavy painful periods, it can affect all your tissues and organs in your pelvis and do there are other symptoms that you might not immediately associate with the gynae issue.

Likewise I wish I knew pain from endometriosis does not always follow a pattern and can occur when you're not on your period and that this can indicate more of a problem.

I wish I'd asked to be referred to an endo specialist straight away.

I wish I'd been more honest about my symptoms and pain, I got too embarrassed to discuss some things but the result is those things continue to interfere with my life but most consultants wouldn't bat an eyelid at them.

[cmbxm]

Diagnosis, I am yet to receive on/have been told I don’t have it, but coming from a woman who has been told she doesn’t have it yet still has all the symptoms, I’d like some sympathy and understanding from doctors, I felt I was made to feel almost dirty and like a cheating liar when they told me I didn’t have it and was told to get on with my life and it was like I’d been dropped from a great height without a parachute yet expected to somehow land on two feet on my own and with that somehow cope with the fact my pain still didn’t have a name. Doctors certainly need more training when it comes to talking to patients, it costs nothing to be kind. X

[Hidden]

I wish I knew that many people who have to suffer with this condition have to fight for a diagnosis. I was easily discouraged at a young age and was diagnosed with PCOS and just blamed everything on that.

I wish I knew that laparoscopy was the only real way to figure out what was wrong.

I wish I knew that not many doctors are well versed in this condition, and that they would brush everything off as “oh you have endometriosis” when you have something else wrong. This happened to me when I had a bad gallbladder taken out just last month. I had to fight them to get a correct diagnosis.

I wish I knew that it doesn’t matter how much you have, everyone can experience an excruciating amount of pain even if it’s a tiny amount.

I wish I knew that when you have endometriosis it can be beneficial to have your appendix removed as well(my next surgery I have scheduled on the 18th, could have had all of my problems taken care of in one surgery rather than 3!!! There is a scientific journal article I will link in a reply to this about removing the appendix while having endo)

I wish I knew how much women struggle with doctors not believing them that they had problems. I thought I was the only one.

I wish I knew there wasn’t a lot of research done on this disease. Perhaps that’s why we get treated so poorly with minimal options for treatment.

I’m sure there’s more I can think of, and it’s similar to what others have already said.

[Hidden in reply to Hidden]

mdedge.com/obgmanagement/ar...

[Hidden]

When I first started to suffer with endo I had never even heard of it. I wish there was more information available. I think young women should be made aware from a young age that pain is not normal, not to suffer in silence and brush it off and to push for answers if they are experiencing pain. I think simply more awareness would make such a huge difference

[Hidden]

Thanks all for your messages- it makes me so angry you’re all going through this and it needs to be better. The consolation I suppose is we are not alone, but it’s not much help when it gets very bad I know.

I hope that through the piece I’m working on it will garner much more awareness which seems to be a very important factor in management and diagnosis -

if you know others on here who might want to share their experience please direct them to this feed- the more we talk the more people will have to listen!

Thanks so much xx

[Hidden in reply to Hidden]

I think it is great that you are doing this. Thank you.

[Kjade]

I wish I knew how much it would affect my mental health. My depression and anxiety are a result of the stage 4 endo, implications for fertility, and the poor treatment by medical professionals.

Everything that jjeemm wrote is spot on also!

[Hidden]

I wish I had known that endo can be a silent disease. No pain doesn’t mean no endo. I had no pain at all, but was experiencing infertility. I had exploratory laparoscopic surgery done to try and determine the cause of my infertility, and the surgeons found extensive endometriosis throughout my pelvis. It was a huge shock for me, and my doctors, because I had zero pain. The doctors were shocked that I had no telltale signs. I had no idea something was wrong.