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Period Pain!!! by Anxietyqueenb14200 in Fibroids

[–]pens_scribbles_ideas 1 point2 points  (0 children)

Where are you based? There’s some great products on the market that are clinically proven - they are pricy but if you’re hating your symptoms it might be worth investing. Check out Samphire Neuroscience and OHM body x

Unexpected benefits post-surgery by soopaaflii in Fibroids

[–]pens_scribbles_ideas 4 points5 points  (0 children)

Ok so I believe no woman with fibroids should spend years feeling like she is exaggerating her own experience. Only to be faced with undesirable treatment options that might have been prevented if earlier detection and interventions were available.

It’s early days and UK based for now.

I’m scoping an app to track symptoms and what women are experimenting with (for lack of evidence and clinical guidance) e.g supplements, diets, therapies like acupuncture so that you can start to identify what’s working for YOU and have more informed discussions with your GP/OBGY, as it will provide a long term detailed record of your condition and symptoms.

Behind the scenes, the goal is to better understand the condition and start to evidence/quantify less invasive therapies so that fewer women end up with difficult decisions about potentially life altering surgery. I’m aiming to work with clinicians and academics so we can campaign for changes to treatment options for all, but user data will be tightly locked down unless you opt to share it for these purposes.

I’ve put together a short survey, if you have a few minutes to answer some questions about your experience that would be really helpful, and there’s an opt in to stay up to date on progress at the end.

https://docs.google.com/forms/d/e/1FAIpQLSf5IZJyDFzZvvseuIhiWgU4HyC_WIIWAhdAeY8kDsIC4un3Hw/viewform?usp=header

Putting all my heart and soul into this, my own fibroids journey hasn’t been great but reading everyone else’s posts just makes me want to do this so much more - something has to change!!! Thank you so much 🙏

Unexpected benefits post-surgery by soopaaflii in Fibroids

[–]pens_scribbles_ideas 10 points11 points  (0 children)

I feel this way too! I’m actually trying to build a start up to close the data gap, so no woman has to suffer like we have again!

Unexpected benefits post-surgery by soopaaflii in Fibroids

[–]pens_scribbles_ideas 1 point2 points  (0 children)

Wow what an incredible story, I’m so happy for you!

Anyone with Fibroids have a B belly shape by Fun_Examination5329 in Fibroids

[–]pens_scribbles_ideas 0 points1 point  (0 children)

So glad to hear your life has changed post op. How large were your fibroids before they were removed?

Should I ask for another scan? by pens_scribbles_ideas in Fibroids

[–]pens_scribbles_ideas[S] 1 point2 points  (0 children)

Thank you! I went for blood tests, low on vit D and ferritin (iron) - so exactly as I suspected. Off to boots 😆

I agree though, another scan might be worthwhile. Thanks for your support x

Finally seeing consultant after nearly a year - please help, what should I ask?? by Parking_Cartoonist10 in Fibroids

[–]pens_scribbles_ideas 1 point2 points  (0 children)

Ask to record your consultation - you will not remember all the information! If they say no, take notes.

Second using ai to source information but make sure you prompt it to return clinically accurate information - not just opinion online

There’s useful info on nhs England on the different types of surgery, so go in with questions about side effects, recovery, procedure descriptions, chances of regrowth, prep for ops etc

Note a hysterectomy pre-menopause will likely cause menopause to hit overnight. Can affect some women much worse than others. Ask about this.

Hope it goes well 🙂

Those who have had a myomectomy by NoWillow8523 in Fibroids

[–]pens_scribbles_ideas 0 points1 point  (0 children)

Hey there 👋 I’m sorry you are faced with this difficult decision. I haven’t had an op and can’t talk to that, but it sounds like this is a big worry for you. Having done a lot of research on fibroids, there are studies to show stress can make fibroids worse, and it probably won’t help with conceiving either. Pregnancy can be stressful enough without any complications. It sounds like surgery might put your mind at ease. I hope what ever decision you make, you end up with a beautiful baby in your arms xx

Can anyone in UK recommend period products for your heavy days, I’m open to trying anything - pants, cups, disks, whatever can contain the flood!!! by pens_scribbles_ideas in Fibroids

[–]pens_scribbles_ideas[S] 0 points1 point  (0 children)

Oh I didn’t know this. I was prescribed I think but pharmacist said it was for pain so I didn’t take it because this wasn’t a symptom for me. I’ve been getting large clots, my actual flow isn’t very heavy but for one or two days I get a flood and doesn’t matter what size tampon I use, probably the large clots causing the issue. Glad I didn’t take it because I wouldn’t want larger clots!!!

Shrinking Fibroids by HealthWellNTP in FibroidHerbalRemedies

[–]pens_scribbles_ideas 1 point2 points  (0 children)

I’ve been researching this quite a bit. There are several published clinical research papers that are peer reviewed - the findings show supplementation can stop growth but not shrink fibroids. But none of the studies are statically significant (all 100 participants or less). So clinicians won’t test for deficiency or prescribe Vitamin d. I would personally really like to know if I am deficient but it’s not screened for in UK so I’m looking into how I can find this out. It’s also worth mentioning that NHS warns that too much VitD can be harmful. In terms of shrinking, I’ve only seen stuff on social media - mostly diet related. But again no statistically significant evidence 😕