America or UK?

[hallc1999]

Hi all, just joined this group to get some answers and feedback during this struggle. i know it says “UK” in the group name. i Only ever seem to find forums and information coming from there. must be more prominent in UK? Its very sad to hear you are on waiting lists to see doctors & have diagnosting tests done. is this true for all people in UK? do you often have to wait long?

[Christin_a]

Hi

So no i don't think it's any more prevelent here compared to the US or anything. I think that because our government has recently been doing stuff specifically around n the impact of endometriosis, and we have a charity endometriosis UK. There's just a bit more notice around our in the UK at the moment.

I know they're are plenty of support groups specifically for the US and around getting the support needed in the US. And with details specific around the US healthcare system.

So everyone has a waitlist to see a specialist. But some areas the wait list of longer compared to others. This can be down to wanting to see a specific specialist, or an area having less endo specialist than other areas.

Some do choose to pay to go private, however it does sometimes cause a false sense of seeing a specialist. There are endo specialist who also work privately but there are also some who don't. Also seems like most private insurance policy providers say general gynecologist are endo specialist when they aren't, so some people pay for the opinion of someone who doesn't know much about endo. Like with the US private system.

[Moon_maiden]

Hi, there are others from the U.S. here as well.

Our system is sort of free, we do pay into it direct from salaries. This does lead to long waiting lists sometimes. Some people do have insurance and can get much quicker treatment, and some do what they can to scrape the money together.

Have you been diagnosed/ treated? Be interesting to know how it’s works for you in comparison

[hallc1999 in reply to Moon_maiden]

I have not been diagnosed yet.

just had my first smear test because i just turned 21. waiting on those results

ive been treated with birth control pills which helped a lot due to stopping ovulation. when i stopped the pill and got an IUD. things went down hill.

In the US most people have private insurance. seeing a doctor is very easy. as long as they accept your insurance you can usually get an appointment the same week. you dont need a referral. ive seen plenty of doctors & made an appointment with a specialist for this upcoming week.

[Moon_maiden in reply to hallc1999]

Happy Birthday (belated)

I hope the consultation goes well, it’s likely easier to get a diagnosis over there. Our General Practitioners go round in circles if they can get away with it. 😂

The endo UK site has some great info for a consultation and getting a diagnosis. Notes re symptoms can be invaluable to take, try not to rely on memory.

Let us know how you get on 🙂

[Pipe5 in reply to hallc1999]

I'm in the US as well. To see top notch excision surgeons, I have encountered months long waiting lists. Currently on one. I think we may be luckier here than UK though. Sounds much longer there.

[RedbudTree in reply to hallc1999]

Seeing a doctor may be easier if you live in an urban area where there are a lot of specialists and have good private insurance. For women without private insurance (either uninsured or with public insurance such as Medicaid) or who live in rural areas, there can be very long waits for care. For instance, my wife is a family medicine specialist in a county with low population density, and she has had patients that need to see a dermatologist told that there is a one year waiting list, even though she believed that this patient may have skin cancer. Also, policies about referrals are set by each private insurance company individually, so patients have to verify with their insurance provider when a referral will be required (and some specialists still require a referral as a guarantee that insurance will pay out).

I have private insurance but it covers almost nothing until my family has already paid $5000 out of pocket - which we likely won’t manage unless I find an OBGYN willing to do laparoscopy- many specialists here will refuse to do procedures for fear of being sued if the outcome isn’t perfect, and many women simply can’t afford laparoscopies, in some cases even when insured, or they have to go into medical debt to get care. Also we don’t have guaranteed paid leave in the US so the time required to recover from a lap is problematic for women who can’t afford to be off work.

There are trade offs to both systems. The bottom line is that it is easier to get care if you have financial resources.

[tedwina]

Hello. Lots of waiting in the UK and many, many years until diagnosis. Plenty of women‘S concerns are dismissed initially and sometimes for years, despite how common endo is. If only men got periods...

[hallc1999 in reply to tedwina]

wow that is terrible. Everyone has free or universal (tax paid) health care right?

[tedwina in reply to hallc1999]

Yes, free healthcare, paid for through taxes, which is really good.