Endometriosis

[boofer1502]

Hi everyone!

What did you all tell your gp when I came to your symptoms? Endometriosis runs through my family and I know for fact it's what I currently happening to me but they won't listen to me. I've done the suggested contraception trial for 3 months to stop my periods BUT I still get the horrible experiences. I've tried the suggested pain killers and it does not touch it. I'm seeing a different gp on the 10th Oct, I'm a really anxious person and can never get my words out correctly or explain myself like I wish too or imagine in my head... has anyone experienced this or know the best way around it? TIA

My symptoms started at 12, went on the pill at 13, diagnosed with endo at 22.

My main symptoms were horrific periods, pain throughout the month, bladder and bowel issues and fatigue.

Insist on a referral to a gynae and take someone with you to the GP appointment if possible.

Unfortunately I live on my own, no family members close enough to bring with me :/

But yes it's the same symptoms here, especially ( sorry for the info) when emptying my bowels or I am gassy. Sharp stab in pelvic area which feels like someone is pulling down with knifes! With the fatigue and nausea.

Wow, so it actually took 9 years to get a diagnosis for you?

Unfortunately 9 years is about average for diagnosis time. I think this is especially the case with women who had it from a young age and know no different. I had no idea that periods could be light, relatively painless or red (!) until I was at university and actually talked to others about their periods. I was completely shocked.

Write your symptoms down in a list. Add a bit at the end about family history. Tell the GP that it’s massively impacting your life and you need to see someone about it ASAP. It’s shameful what women are expected to put up with.

I hate to admit it but I cried in front of GP 😂
Female GP, if that makes a difference.

I'd gone on the Pill at 15 for "bad period pains".
Stayed on it constantly, switching to Depo injection probably late 20s. Periods, and symptoms were lighter when on the pill, and virtually non-existent on Depo.

Late 30s, I'd moved back from a spell overseas, and having not seen a UK GP for repeat Depo along with a spell of "not wanting chemicals in my body" ;-) I subsequently had a couple of years of horrific heavy periods, the pain, feeling the closest I've ever felt to "depressed" etc, I finally went back to GP.

Told her all this, in amongst my tears, she looks at me & said it's 99.9% endometriosis.... can only formally diagnose with hospital checks but likely that the Depo would relieve symptoms. So, I went back on it, and touch wood ..... I am a new woman!

Not that that will work for everyone, but don't suffer in silence. Try different GP or nurse if you need to, bring a list of symptoms etc.

I deliberately went to a female GP, which is not something I'd ever been bothered about doing before. I kept a detailed symptom diary beforehand (similar to those listed, most troublesome symptom was period pain so bad it was immobilising and causing me to vomit). She told me she suspected endo and referred for a scan and bloods immediately.

I am one of the lucky ones to have been definitively diagnosed quickly, but this was in part because my some of my test results required an MRI to exclude cancer. I am now awaiting an appointment with an endo specialist with a treatment plan.

Oh wow guys, thank you so much for the advice! Will definitely take a list in next time and mention the family history! Can't believe it takes so long for to be diagnosed... I've never had period pains and periods where always light(ish) untill two years ago I got cramps and heavier periods ( I put it down to having my LO) but the last few months it literally stops me from what I'm doing to them vomit after the pain relieves a little.

What happens after you're diagnosis, is there any end to this or is it just pills?

Again thank you for the help and advice it really does mean a lot!

Some women respond really well to excision surgery where it’s cut away (diathermy or laser where it’s burned away is basically nonsense) but very few specialists in the U.K. who are trained in this. I can fully recommend the endometriosis centres at UCLH in London and the John Radcliffe in Oxford, I don’t live in those areas but managed to get an out of area referral - you can request to be seen wherever you want, the GP just needs to specifically request it on the choose and book.

Unfortunately after 15 years, six surgeries and every hormone treatment I’m worse rather than better. I also have adenomyosis and am considering a hysterectomy.

Symptom wise I had painful periods, sex hurt, and I got searing pains all across my abdomen when my bladder was full (turned out the outside of my bladder was covered with endo tissue). I was diagnosed quickly (within less than a year of having problematic symptoms) partly because I have private medical cover so tests (initially a scan, then a diagnostic laparoscopy) happened very very quickly. I then had a laparoscopic excision which worked brilliantly. I have since had two children. I’m in the south west and my gynaecologist is an endo specialist, he does both private and NHS consultancy work, do feel free to PM me if details would be helpful.

Totally forgot about painful sex - this is how normalised it is I guess!

What's andenomysis!?

Hysterectomy is a huge decision to make but then again after 15 years of suffering I can see why you would opt for it. I'm seeing different results for everyone commenting suppose we take to the "treating" of it differently. It sounds like a very long process I might just start off with my next appointment telling the gp that I want a referral to the gyno..