Could I have endo ?

[Poppett72]

I am 48 and peri menopausal so my periods are now quite irregular. I get the most intense pain in my legs which radiates from my pelvis into my lower back and down my legs. My thighs are the most painful . It starts like this :

Feel cold

Develop migraine

Intense fatigue and fall asleep

Wake up in pain from waist down

Suffer 2/3 days then it goes as quick as it came

Symptoms always before period (even though I don’t always have one ) but get bloated sore boobs and the usual pms symptoms. These leg pains stated 4 years ago and seem to be intensifying

Spoke with a doctor in phone this morning and he cut me dead after my first sentence and said I am too old to suffer endo ?

Tramadol helps me sleep but no pain killers touch the pain.

I have a retroverted uterus and often get sharp stabbing pains up my bottom

Anyone unlucky enough to have suffered these symptoms particularly the leg cramps as it is really draining me and affecting my quality of life ?

[Moon_maiden]

Your Doctor is very wrong as far as age goes, I’m 52 and was diagnosed last December (51 then), had lap Feb which confirmed it. Please feel free to pass that on.

End of 2018 had uti, had gone A&E as GP thought might be ulcer, period started and the test came back as infection. Most of last year I got fobbed off one way or another until going private. It was the only way to get some advice. Turns out I have enlarged uterus (14-16 was) and numerous fibroids. Had three show on renal scan.

I also had assumption of menopause/ peri menopause as well.

If your doctor still doesn’t believe, feel free to message me.

Although even with letters, op I’m not convinced mine believes it either 🤣.

[Poppett72 in reply to Moon_maiden]

Thank you moon maiden.

He was very condescending and I came off the phone in tears. I felt compelled to complain about him but they fobbed me off due to COVID !

Anyway I insisted he referred me to rule it out - as much as I don’t want endo I actually want to prove him wrong 🤣

[Moon_maiden in reply to Poppett72]

I really hope you don’t have it either.

I did feel a bit vindicated, I haven’t had an actual apology for having oh so many appointments/ contact last year, and tears. It’s horrible.

You may want to request a copy of the referral letter, if you have online access you may see it there. Make sure it’s appropriate, you’re entitled.

Regardless of virus, they are still seeing patients if need be.

[Linley]

Your doctor is a General Practictioner not a specialist Gynae in my opinion you are right to ask for referral. I have been very lucky to have GP who listens and has referred me.

[Daisychain222]

I really have to wonder why we even speak to doctors that say crap like that!! Yes, I always had terrible pain down my legs, especially my left thigh...... definitely sciatic pain. Although, endo completely ate my left ovary and tube and turned it into an ugly black mass. It sure sounds like you have endometriosis and should seek out a good gynaecologist who specializes in endo. It is a debilitating disease and it’s time they found out what causes it. I had to have a hysterectomy at 39 yrs which put me into surgical menopause. You are not alone and need to find a specialist to help you . Endo can cause an abundance of bizarre symptoms and we need to trust that what we feel is real and not in our heads. It’s good to keep a diary of your symptoms, so that when you finally get in to see a specialist, you will have it ready

I am so sorry that you are suffering..... This needs to change

[Poppett72 in reply to Daisychain222]

Yes I have diagnosed sciatica too with bulging discs and the doctor feels fairly sure it’s that but sciatica is a very distinct pain isn’t it not like this cramping poison feeling in my legs. I’m sure like you it’s endo sciatica and the fact that it is clearly hormone related .

I don’t have any painful sex though or stomach pains that a lot of women speak of with endo ?

I’m sure it will be a long road for diagnosis but I will keep you all posted ladies and it the mean time shall keep my distance from that horrible doctor 🤣

[MMistry]

Hi, sorry to hear about your pain.

Yes the leg pain is a thing, I have had it since I was 13, my mum also had it and runs through the family. I understand how you feel, it’s literally so bad that you can move.

I don’t really understand why it happens, I started going to an osteopath just before the corona virus but haven’t been able to go since but hoping that will help.

I’m thinking it’s we’re we are in so much pain we tense up. She explained about doing some pelvic exercises to help release that tension.

I hope you feel better soon

[BecWa]

I am 55 and was diagnosed with endo in September. I am still having periods and it was only discovered after I complained of severe pain radiating down my leg. My GP sent me for a scan. A cysts showed to be on my right ovary. I was monitored. As the cyst growing I was offered the opportunity to have it removed.

I have had the cyst and ovary removed as a precaution and it was then that they saw I had stage 4 endo. I have always been told my heavy periods were down to my age!

[Parvez_66]

Hello, I am 49 and I have same symptoms.my gynaecologist told me I have endometriosis .and I will going for hysterectomy surgery soon waiting for appointment