@chronicpain @mecfs
@endometriosis

Also wanted to point out that I have #endometriosis & this mofo dr doesn’t think I need painkillers.

*tears phone book in half*

Any endo remedies welcome. No hormones please. IUDs or otherwise. I’ve had oestrogen blockers pushed on me but refused because of the huge osteoporosis risk. Turns out they don’t help & oestrogen isn’t the problem in endo…🤦‍♀️

If things go bad & I can’t get #pain #meds on time, can anyone recommend #herbs/remedies/whatever to help withdrawal?

Also, is there anything legal & equivalent in pain control to 25ug fentanyl (not as strong as you think). If I can find something I don’t need a script for that would be great so I’m not held hostage like this in future.

Medicating yourself is pretty much illegal in #Australia unless it’s alcohol.

#Kraktom is illegal btw

#ChronicPain @chronicpain
#Mecfs @mecfs #Endometriosis

Woman accused of faking symptoms of debilitating illness dies aged 33 | The Independent
https://www.independent.co.uk/news/health/ehlers-danlos-syndrome-stephanie-aston-death-b2405284.html

#EDS
#EhlersDanlosSyndromes
#Misdiagnosis
#MisdiagnosedAsMentalIllness
#NIH
#Endometriosis
#Misogyny

‘It’s really only the beginning’: are we on the cusp of a breakthrough in endometriosis? | Endometriosis | The Guardian
https://www.theguardian.com/society/2023/aug/10/its-really-only-the-beginning-are-we-on-the-cusp-of-a-breakthrough-in-endometriosis

#Endometriosis

Want to contribute an object or story to our #Endometriosis exhibition? Let us know by 30th July so we have plenty of time to organise postage! https://masto.ai/@vagina_museum/110729492405994140

¿Puede que la #endometriosis tenga relación con una infección bacteriana? ¿Qué se sabe al respecto?

https://theconversation.com/la-pista-bacteriana-de-la-endometriosis-esperanza-o-falsa-ilusion-208387

More on endometriosis from NPR. The July 19 Short Wave podcast (audio plus transcript) talks about recent research:

"This cellular atlas could lead to breakthroughs for endometriosis patients"

#Endometriosis #Research #Genomics #Podcast

Oops, I messed up when I tried to add to this thread about endometriosis.

Here's a link to the rest of the thread.

https://disabled.social/@ahimsa_pdx/110753025773320966

(there are some duplicate posts)

#Endometriosis #ChronicIllness

Re: that thread on endometriosis, I messed up one of the links, sorry!

I will come back later and try to fix it.

First part of thread:

https://disabled.social/@ahimsa_pdx/110731022134568706

Second part of thread:

https://disabled.social/@ahimsa_pdx/110731066969172317

I think that's right but I'll have to come back later to check.

#Endometriosis #ChronicIllness #Documentary

Just like the folks in that NPR article I searched online for whatever information I could find. This was in 1999.

I found a specialist in another city who did excision surgery for endometriosis. That was his entire practice.

I had excision surgery in 2000 and it removed almost all my pain. Ibuprofen was able to remove any remaining pain.

I know excision surgery does not work for everyone so I feel lucky that it worked for me.

13/13

#Endometriosis #ChronicIllness #NEISvoid

My pain started escalating again in the mid-1990s. One likely factor was that I stopped using hormonal birth control (had a tubal ligation). Another factor could be the onset of ME/CFS.

By the late 1990s my pain was excruciating (screaming pain) in spite of taking lots of meds. My local doctors didn't have any options other than medical menopause - many bad side effeccts. I realized that I needed to look for more options.

12/?

#Endometriosis #ChronicIllness #NEISvoid

A little bit of my personal experience with endometriosis:

I always had bad periods but they got worse in college (1978-82). Before 1983 Ibuprofen was prescription so I didn't have many over the counter options. I remember taking aspirin and drinking cheap wine (drinking age was 18) to try to dull the pain.

I started hormonal birth control somewhere around 1984-1985 and that eased my pain a bit. But nowhere near a cure.

11/?

#Endometriosis #ChronicIllness #NEISvoid

Quote:

7. A bipartisan effort is working to secure more funding for endometriosis research

Cohn says more research funding is sorely needed to address the disease's many unknowns. "I hope that we can do things like trying to find ... what is actually causing endometriosis. Because until we find that out, it's hard to really find ways to treat it. I hope that we can find a non-invasive diagnostic tool …"

10/?
#Endometriosis #ChronicIllness #Documentary

Quote:

6. To get proper care, patients need to take their health into their own hands.

Both Laura Cone and Jenneh Rishe learned about excision surgery from other patients on the internet.

Cohn also encourages patients to ask pointed questions in their doctors' appointments …

She recommends asking the surgeon if they do excision, and how frequently they perform endometriosis surgery …

9/?

#Endometriosis #ChronicIllness #Documentary

Quote:

5. Most surgeons are doing endometriosis surgery wrong

[ablation surgery] misses tissue hidden from the naked eye …

The gold standard method of surgery is excision, where a surgeon removes endometriosis lesions and often adjacent tissue. Studies show a greater reduction in symptoms after excision compared with ablation, and fewer patients come back for repeat surgeries.

8/?

#Endometriosis #ChronicIllness #Documentary

Quote:

3. A hysterectomy won't cure endometriosis. Neither will pregnancy

"Over 100,000 hysterectomies are performed every year for the disease and...most are unnecessary," says Heather Guidone, surgical program director at the Center for Endometriosis Care in Atlanta, Ga. Another common myth is that if a person with endometriosis gets pregnant, their symptoms won't return after their cycle resumes.

6/?

#Endometriosis #ChronicIllness #Documentary

I had to take a break but I'm finally back to continue this thread, a list of 7 takeaways from a documentary on endometriosis, from an article by NPR.

Here's that link again so you don't have to scroll up to see it:

https://www.npr.org/sections/health-shots/2023/07/16/1186533247/endometriosis-a-painful-and-often-overlooked-disease-gets-attention-in-a-new-fil

5/?

#Endometriosis #ChronicIllness #Documentary

Quote:

4. Endometriosis is responsible for up to 50% of infertility.

Endometriosis can negatively impact fertility in several ways including distorting the anatomy of the pelvis, causing scarring on the fallopian tubes and ovaries, changing the hormonal environment, and altering the functioning of the immune system. Surgery to remove endometriosis and fertility treatments may increase the likelihood of a successful pregnancy.

7/?

#Endometriosis #ChronicIllness

Quote (part of item 3):

A hysterectomy is however the definitive treatment for adenomyosis – a disease where tissue from the uterine lining invades the muscle wall of the uterus. Adenomyosis also causes painful menstruation and infertility, and many patients have both conditions.

6/?

#Endometriosis #Adenomyosis #ChronicIllness

Quote:

3. A hysterectomy won't cure endometriosis. Neither will pregnancy

"Over 100,000 hysterectomies are performed every year for the disease and...most are unnecessary," says Heather Guidone, surgical program director at the Center for Endometriosis Care in Atlanta, Ga. Another common myth is that if a person with endometriosis gets pregnant, their symptoms won't return after their cycle resumes.

5/?

#Endometriosis #ChronicIllness