Endo sufferers - how did you approach this with your doctor?

[Guacamole123]

Title says it all really. i’m certain I have endo, I have crippling cramps and experience pain all through my cycle, sciatic pain, painful sex and pain going to the toilet on my period. we’ve also being trying to conceive with absolutely no luck.
i had a stage where I was back and fourth at the doctors a lot with my problems and was getting palmed off with birth control and naproxen. I don’t want to go on birth control as the hormones made me a NIGHTMARE and naproxen did sweet duck all. In the end I gave up trying to push the doctors as my mental health is already damaged due to the pain I’m in, and not being understood was just getting me more down.

how did you all suggest endo to your doctor? I’m not the type to go in all guns blazing, and I don’t want the doctor to feel as though I’m doing their job by self-diagnosing. I’ve considered seeing a private specialist but unsure if I still need my GP to refer me?

 

[Cookies Monster]

I have endo and literally went in with a written list of symptoms and asked to see a gynae. Sometimes you do have to do their job for them and that's ok because you need to get what you want from the consultation.

They'll probably do some bloods, check hormone levels and arrange a scan. Endo can't been seen on scan but it will rule out cysts or fibroids etc. Then you see a gynaecologist and hopefully have a laparoscopy to diagnose endo. Best to find an excision specialist if possible. You're also your most fertile the first 6 months after the surgery.

Loads of great info in Endometropolis group on FB.

 

[AmberSpyglass]

I first went to my GP because of abnormal bleeding ; after sex was my main concern. She examined me and said I had a bulky cervix and she immediately referred me for a scan ( getting in the system is the hardest part), that then led to a diagnosis of cysts and then a laporoscopy where my Endometriosis was confirmed, it was a fairly slow process iirc.

How many GP’s have you seen? I’d be seriously considering seeing a private Dr if you’re being fobbed off and not getting anywhere because Endo is soul destroying as you know.

Do you have female relatives ?, it can run in families , both my sister and Mum had it too .

 

[ChrissyPoo]

It took me years and years to finally be taken seriously with endo. I had to do a lot of my own research, and then requested a second opinion with a different gynaecologist. They had already done a lot of ultrasound scans, so arranged for laparoscopic surgery, where they then found and lasered the endometriosis. I fell pregnant the first time we "did the deed" after surgery, and the pain and symptoms subsided for a year after I'd given birth. I found that they took me more seriously after my first child (which makes no sense whatsoever to me). It's an ongoing struggle, though.

All I can suggest is to be firm. Request to see the gynaecologist. Go in with a list of symptoms, and perhaps even a diary of when symptoms occur. Give suggestions as to what you might think it is. If you're not happy with the outcome of the appointment, request a second opinion.

 

[Mizzdee]

Persistence. It took almost 10 years to be diagnosed and 2 laparoscopies. It is hugely underdiagnosed and the most common gynaecological condition.

Also, inquire about "Zoladex" - the gynae let me try it even before my diagnosis. It temporarily puts your ovaries to sleep, hence you get substantial relief from the pain and discomfort.

 

[AnnieWood]

My doctor just ignored my regularly bleeding on the pill for a year until I had the worst pelvic pain and urgency to urinate all the time. I have had an ultrasound which have been told I have Endometrial polyp which is similar to endometriosis. I have started these supplements from iHerb. They seem to be helping a lot. Good luck

Serrapeptase to reduce scar tissue and inflammation with endometriosis

The supplement of serrapeptase has many benefits to help reduce pain, scar tissue and inflammation with endometriosis and helps reduce scar tissue caused by surgery

www.endo-resolved.com

 

[Guacamole123]

I first went to my GP because of abnormal bleeding ; after sex was my main concern. She examined me and said I had a bulky cervix and she immediately referred me for a scan ( getting in the system is the hardest part), that then led to a diagnosis of cysts and then a laporoscopy where my Endometriosis was confirmed, it was a fairly slow process iirc.

How many GP’s have you seen? I’d be seriously considering seeing a private Dr if you’re being fobbed off and not getting anywhere because Endo is soul destroying as you know.

Do you have female relatives ?, it can run in families , both my sister and Mum had it too .

I’ve seen too many docs to count over the years but I’m at a different practice now so this will be my first time at the new surgery. I’ve been recommended a private consultant through a friend. I think my plan is to ask for a gynea referral when I go (2 weeks until my appointment) and if that fails I’ll be visiting the consultant privately. The one I want to see also works for the NHS so my hope would be that after I’ve paid for a private consultation he puts me on his NHS list!! My grandma had a hysterectomy as a result of endo, and my mam thinks she had it but symptoms alleviated a lot after having me, so I guess she’ll never know!

My doctor just ignored my regularly bleeding on the pill for a year until I had the worst pelvic pain and urgency to urinate all the time. I have had an ultrasound which have been told I have Endometrial polyp which is similar to endometriosis. I have started these supplements from iHerb. They seem to be helping a lot. Good luck

Serrapeptase to reduce scar tissue and inflammation with endometriosis

The supplement of serrapeptase has many benefits to help reduce pain, scar tissue and inflammation with endometriosis and helps reduce scar tissue caused by surgery

www.endo-resolved.com

Oh my what a weird coincidence, I’ve just ordered those supplements! I’ve done a lot of research and a lot of people on forums have claimed it’s unblocked their tubes and alleviated pain, so I guess it’s worth trying out

 

[AnnieWood]

I’ve seen too many docs to count over the years but I’m at a different practice now so this will be my first time at the new surgery. I’ve been recommended a private consultant through a friend. I think my plan is to ask for a gynea referral when I go (2 weeks until my appointment) and if that fails I’ll be visiting the consultant privately. The one I want to see also works for the NHS so my hope would be that after I’ve paid for a private consultation he puts me on his NHS list!! My grandma had a hysterectomy as a result of endo, and my mam thinks she had it but symptoms alleviated a lot after having me, so I guess she’ll never know!


Oh my what a weird coincidence, I’ve just ordered those supplements! I’ve done a lot of research and a lot of people on forums have claimed it’s unblocked their tubes and alleviated pain, so I guess it’s worth trying out

I also read great thing about these supplements so can’t help but try them. My pelvic pain has stopped since taking just the Serrapeptase but thought I would also add the Nattokinase and get another ultrasound done in 6 months to see how it’s working. Good luck

 

[Fin]

I first went to my GP because of abnormal bleeding ; after sex was my main concern. She examined me and said I had a bulky cervix and she immediately referred me for a scan ( getting in the system is the hardest part), that then led to a diagnosis of cysts and then a laporoscopy where my Endometriosis was confirmed, it was a fairly slow process iirc.

How many GP’s have you seen? I’d be seriously considering seeing a private Dr if you’re being fobbed off and not getting anywhere because Endo is soul destroying as you know.

Do you have female relatives ?, it can run in families , both my sister and Mum had it too .

Interesting! The GP strongly suspects my daughter has endo but has ruled a laparoscopy a last resort, she had a scan but nothing showed up. I have it but had absolutely no idea as I don't suffer any pain at all. I was sent for a laparoscopy due to irregular bleeding. Surprisingly mine is very extensive and has caused a lot of adhesions, they showed me photos. They told me that someone can have the tiniest bit but be in agony or be like me and not have any pain. I'm going to suggest serrapeptase to my daughter, thanks to the person that mentioned it.

 

[AmberSpyglass]

Interesting! The GP strongly suspects my daughter has endo but has ruled a laparoscopy a last resort, she had a scan but nothing showed up. I have it but had absolutely no idea as I don't suffer any pain at all. I was sent for a laparoscopy due to irregular bleeding. Surprisingly mine is very extensive and has caused a lot of adhesions, they showed me photos. They told me that someone can have the tiniest bit but be in agony or be like me and not have any pain. I'm going to suggest serrapeptase to my daughter, thanks to the person that mentioned it.

Why is a laporoscopy considered a last resort for your daughter?

 

[Fin]

Why is a laporoscopy considered a last resort for your daughter?

Because the GP said there were too many risks attached to it. Personally I feel she should push for it. Not that it should make a difference but she has a female GP.

 

[ChrissyPoo]

Because the GP said there were too many risks attached to it. Personally I feel she should push for it. Not that it should make a difference but she has a female GP.

I would definitely push for it. Laparoscopy is the only way to diagnose endo.

 

[Fin]

I would definitely push for it. Laparoscopy is the only way to diagnose endo.

Yes exactly. They initially thought her pain was due to ovarian cysts but her ovaries are clear. Unfortunately my daughters isn't as confident as me when it comes to the medical profession but I'm going have another chat with her about it.

 

[AmberSpyglass]

Because the GP said there were too many risks attached to it. Personally I feel she should push for it. Not that it should make a difference but she has a female GP.

I didn’t think a laporoscopy was risky, I had mine in day surgery, I was bruised and had 4 incision stitches that had to be removed 5 days later but it was very straightforward and diagnosed my endo.

 

[Guacamole123]

I’ll definitely be pushing for a lap. The way I think of it is that the docs will give you pain meds / birth control for it, but that’s not actually doing anything for the endo? And it can’t even be confirmed properly without the lap. I’ll be refusing birth control when I go to the docs so I’m hoping that they don’t not refer me as a consequence

 

[Fin]

I didn’t think a laporoscopy was risky, I had mine in day surgery, I was bruised and had 4 incision stitches that had to be removed 5 days later but it was very straightforward and diagnosed my endo.

Yes I've had two with no issue, one which diagnosed the endo I had no idea I had.

I’ll definitely be pushing for a lap. The way I think of it is that the docs will give you pain meds / birth control for it, but that’s not actually doing anything for the endo? And it can’t even be confirmed properly without the lap. I’ll be refusing birth control when I go to the docs so I’m hoping that they don’t not refer me as a consequence

I just saw this on the news, MP's are launching an investigation into endometriosis to improve diagnosis and treatment. There's a call for evidence survey at the bottom of the article. https://tattle.life/threads/19920/