What do you want to ask about having endometriosis?

[stessman]

Hi ladies - I'm going to be attending the World Congress on Endometriosis this week. If you could be in a room with some of the world's leading medical practitioners and researchers on endometriosis, what would you want to ask them?

[Tillyfloss]

hi. My question would be about diagnosis. I've only known about endometriosis since Sept 16 and I was lucky not to suffer the years of pain and frustration that some women have to endure. What can they do to help educate the gps and gynes to help people quicker? I'm awaiting surgery at a bsge centre but I've been to my local hospital when the pain becomes unbearable and I find I have more understanding of the condition than the people trying to treat me! It's such a common disease but so few people in the medical profession seem to get how painful and difficult it is to live with.

hope you enjoy the congress and you get some useful answers. Xx

[stessman in reply to Tillyfloss]

Hi, at the Congress it was brought up repeatedly how long the average time for diagnosis takes (still 7-8+ years) and the fact that what you said is exactly the case, there needs to be continued education so that gp's and gyns recognize the symptoms better and women aren't being bounced around through the medical system without getting diagnosed and treated as soon as they should. The official endo organizations around the world are working very hard to put the information out there and attendees were encouraged to become "advocates" for endometriosis education by networking with interested people and putting together the "awareness days", marches or other events, talks in schools etc. and just in general doing anything possible to keep increasing awareness.

[EllaRuby]

What do they think causes it? And is it thought to be another autoimmune disease? If so, would immunotherapy help treat it?

[stessman in reply to EllaRuby]

If you go to the endometriosis-uk.org website there is a listing of some of the theories of the causes. I also mentioned one in another post in this thread. There is no agreement on one overall cause at this point. Factors that play a part in the condition include hormones, inflammation, genetics, immunological process disruption, environmental toxicants. There does seem to be a significant association between endo and other autoimmune conditions like lupus, rheumatoid arthritis, sjogrens syndrome, Celiac disease, Graves thyroid disease, multiple sclerosis. There is further investigation being done into the potential use of immunomodulators for the treatment of endo.

[rachel239]

Hi 😊 my questions for the experts are this: if endometriosis is a progressive disease with no cure, then surely excision surgery and any further medical treatment (i.e. HRT) purely treats the symptoms rather than the condition itself?

Secondly, what are the long term effects of HRT (especially prostap) and why is this, so far, the only 'effective' treatment for endo?

Thanks.

[stessman in reply to rachel239]

There are many women who have had great or complete relief from expert excision surgery so many would say this is the most effective treatment for endo as it does more than just treat the symptoms, it removes the affected tissue. But not a 100% "cure".

Also, this level of surgery is just not widely accessible or affordable : (.

Hormone treatments can slow down or inhibit further growth, and suppress symptoms but aren't a cure.

See my post at the very bottom of this thread talking about a multi-disciplinary approach to treating endo - there's more movement towards integrating different treatments, and individualizing them because the symptoms women with endo experience are so wide and variable.

[Georgina78]

Are ladies with endo more likely to have natural killer cells that would prevent an embryo implanting? And does the stage of the disease affect this? Would trying to reduce the inflammation in our bodies give us a better chance of becoming pregnant?

Thanks!

[Hidden]

Do they think that endometriosis is a genetic condition? X

[stessman in reply to Hidden]

There was acknowledgement that genetics were involved but not a consensus on it. There is a theory that it happens during embryonic development (google Dr. Redwine and Mülleriosis). The statistic was quoted that a woman who has a first degree relative with endo has a 7 fold risk of developing it. It may be genetic in origin but there are other factors that then can affect the severity and symptoms experienced.

[Starry]

1. Fatigue. I am desperate , utterly desperate, to know what causes the extreme chronic fatigue and how it can be treated. It is that that has wrecked my life and career and how to stop it. All of the Endo resources talk about the pain but seem to ignore this debilitating symptom, painkillers can manage pain but there is nothing that works on fatigue. Please research something to help and recognise it as a key factor detrimentimg quality of life for endo sufferers.

2. I have been told deep endo is resistant to hormone treatment but opinions differ and my BSGE surgeon is sceptical. Can all endo biosynthesise oestrogen or just some types. Can we validate this idea or is it a myth? How do I find out which treatment will work for me given my endo type? Can we segment endo types to get more appropriate treatments eg by blood tests?.

3. Are bio identical progesterone hormone treatments better than progestins and why aren't they available for endo treatment in UK? Why is the coil pushed on us when it is sited in the very place that already hurts so can make symptoms worse. Can we get better hormone treatment options.

4. Is it an autoimmune disorder rather than a gynaecological?, if so what additional treatments can be used to help us, and how long till they are trialled on humans?

5. Is Bilateral Oopherectomy without excision a valid treatment pathway and if so in which situations?

[stessman]

Wow, great questions ladies! I have copied them all down and I'll be listening to all the information that comes out and see if I get any opportunities to actually ask specific questions.

[Hidden in reply to stessman]

Hello. Could you please share some of your learnings from the conference? Thanks

[Starry in reply to stessman]

Did you get to ask any questions @stessman ?

[Patricia2015 in reply to stessman]

So curious about the questions and answers....

[Tjb45]

What research is being done to try to find a non surgical treatment.

Is there any evidence that herbal/natural/non medication treatments can be effective?

[Bethleah]

Hi

Given that we women are individuals we experience a range of symptoms, more than just heavy bleeding and pain what is being done to train the GPS (as they are our frst point of contact) in linking theses symptoms to endometriosis and seeing it as a whole rather than believing that symptoms fit into nice little boxes that another department looks into? I have over a dozen symptoms, worse than the pain which are debilitating but these get dismissed until you see a bgse (even then they 2 consultants tell you .different things. Sinus and balance problems I have now been told are probably due to my hormones. Which I knew anyway.

Also I was diagnosed 2008 after 20+years and the treatment hasn't changed. Bgse centres have appeared but in my case they would operate then said no as too risky. What research is being done I to treatment options, especially treating the cause as well as the symptoms.

Good luck x

[Jesshod]

Why isn't enough doctors educated in endometriosis and why does it take so long for a diagnosis

[stessman in reply to Jesshod]

One of the speakers talked about some of the possible reasons behind there being such a delay in diagnosing endometriosis and they included: Endo is an underappreciated condition, with not enough awareness, the symptoms may be mistakenly dismissed as routine menstrual pain. Birth control use starting young may suppress symptoms until a later age. There are no definitive diagnostic signs, no non-invasive diagnostic tests, there is a reliance on surgical diagnosis, but a reluctance to perform surgery without severe disease or with a young patient, and a lack of nonsurgical markers.

[jazza]

I am one of the rarer cases where i have endometriosis and i am 23 years old. They discovered it as i had surgery to remove a medium size cyst on my left ovary. After my surgery the doctors only offered me to go on the pill which i didn't want to. So now i have no form of treatment and i am in a lot of pain most of the time. even so i'm not old enough to have my fertility tested i'm just left in the woods really. So what hope is there for me the small majority of young woman who have endo but arent ready to have kids right now? it could be too late by the time im ready. im lost

[JackieBo in reply to jazza]

The pill might help hold it at bay until you're ready for family planning. Just a thought. ❤️

[stessman in reply to jazza]

Hey Jazza - sorry to say it's becoming more common for young women and even teens to be diagnosed with endometriosis. If you were only offered the BCP then I would suggest you weren't given enough options to choose from. There are other medications, especially that may help with the pain. For birth control until you're ready to conceive there is always the option of using natural methods of birth control, which take more work upfront to learn, but can be very effective - there are even apps out now that help you with tracking. But for your pain, I would look into finding an experienced surgeon who does excision surgery for endometriosis. I don't know what your surgery entailed, if they only removed the cyst, or did they remove endometriosis as well, but the type of surgery makes a difference in the results. Also, if you can find an experienced pelvic floor physical therapist they could definitely help with the pain levels. Your national P.T. association should have a directory. I believe nutrition changes and supplements especially for endo and your body in particular can be quite helpful as well, and I myself had very good results with using all of the above as well as acupuncture. I'm sorry you seem to have been left without being given more resources to pursue, but these are some ideas.

[stessman]

Hi all - the Congress was somewhat overwhelming - 4 days of talks, with sometimes 3 or 4 rooms with different lectures running at the same time, so I had to pick and choose which ones I was most interested in. They were presented by and geared towards medical professionals, so those of us who are in other fields, or simply women with endometriosis had a lot of technical information to digest. I'm working on a blog with the highlights of information I found helpful and then further blogs over the coming months to go more into detail on some of the topics that were brought up however I can't post any links to my website here. So I'll try and briefly post some of the highlights that you may be interested in based on the questions you asked.

When it takes an average of 7-8 years to be diagnosed, you wonder what progress is being made on understanding and treating this condition, but there really is quite a bit of research being done and the endometriosis organizations and advocates were there representing and are working hard to spread education to women and also general practitioners and the medical community so this improves. In one of the talks on research being done on auto-immune connections, a women with endo stood up at the end and thanked the speakers for the work they're doing and how important it is because they have the possibility of improving the lives of approximately 180 million women worldwide, and there was a round of applause. So it was encouraging to see the efforts being made. Multi-disciplinary support was often mentioned - that it often takes a variety and individualized combination of treatments (ie. excision surgery, hormonal and/or pain medications, nutrition and lifestyle changes, mindfulness practice (mind/body connection), pelvic floor physical therapy, acupuncture etc.) to manage it - that has definitely been my experience.

I'll start posting more specific replies to the questions as I have time this week!

[Starry]

Sounds fascinating , can you share the name of your blog if not a link?