New and nervous: Hi, my name is Kate, I'm... - Endometriosis UK

Endometriosis UK

70,634 members52,126 posts

New and nervous

katerossy89 profile image
3 Replies

Hi, my name is Kate, I'm new here and not diagnosed officially yet with endo, but I'm 90% certain I have it. I've PCOS and hypothyroidism and since day one at 11years old, I've had horrible periods. Always been told they are 'just heavy' and 'lose weight'...however in the past couple of years my PCOS has flared hugely, causing even heavier periods, hirsutism, PMDD, you name it, I have it. I have constant leg pain, like varicose veins but far too tender, I cant cope with any pressure being put on my inner thighs, even while moisturising, same around my knees. I've pretty constant pain in my hips, up my sides, under my ribs, my lower back and pelvic region. I also have had increasingly bad period cramps these past nine months, I'm constantly taking medicine, from seven days before period is due! This month, I had a bleed at ovulation (normally it's just pain) but I've also had urethral bleeding which was really scary. I'm now bleeding from urethra again, emergency doctor says its a UTI but I'm not sure, I've no discomfort on urination and now my actual period has started. It seems too coincidental that I have all these symptoms, getting increasingly worse as the months go on. Maybe I'm wrong. Apologies for the rambling length of this. Any advice would be greatly appreciated.

Katie.

Written by
katerossy89 profile image
katerossy89
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Shelly92 profile image
Shelly92

How did they diagnose you at 11?

Some like the hair symptom sounds like it but I'm not sure about the other symptoms.

I've heard others say same thing

First

Get a true DX

If it's endo or anything needing GYN surgery go to a center that specializes in this .

Most Gyn's really are not skilled enough to do the the delicate surger needed .

So please get DX

Then start researching

I wish I had had that option I never would have let them cut on me at all

katerossy89 profile image
katerossy89 in reply to Shelly92

Hi, sorry I didn't get a notification, thank you for responding :-)

At 11 I started my period and even allowing time for hormones 'settling', I never had a normal period, always heavy. By 12 I had been given cyklokapron and ponstan on various occasions so they had checked my thyroid function which came back as borderline hypothyroid, but not low enough to need medication. At 15 I started Eltroxin, but I had put down four years of heavy periods which at that stage felt 'normal' to me. More than once I was told this was ok because I was overweight and hypothyroid. IBS has always been a huge issue, food intolerance, fatigue and much more. Was later diagnosed with fibromyalgia but not entirely sure that was accurate. At 22 I begged a GP to put me on a pill (again due to weight he was reluctant) but I was exhausted from heavy periods and was in a relationship at the time. I started Noriday (norethisterone) for six months. It felt totally unnatural. On stopping it, I noticed abnormal hair growth on my chin, face, chest, back and thighs. This and other issues finally got a very drawn out diagnosis of PCOS...Now I seem to be dealing with something else. I just don't know where to turn anymore. In Ireland, unless you go private (and even then I'm not sure of the procedure) it is impossible to see someone specalised in Endo without seeing a general gynae first. And it takes months...Anyway, I'm sorry to have ranted on for so long. Thank you for replying again, I'm sorry to hear you're unhappy with the treatment you received. It's so hard to have to battle so hard when you feel so unwell. Take care, Kx

Shelly92 profile image
Shelly92 in reply to katerossy89

I'm fine now

No pain

Bowel issues that I refuse to let a dr around it

I know endo women have a lot of IBS diagnoses

But you know the diagnosis that as no real test to know for sure is guessing

If a dr can't find anything he can fix he pronounces that you have

IBS

CHRONIC FATIGUE, who would not be tired after fighting pain

Wears you out

Or get depressed

Which they are more than happy to DX you with and prescribe antidepressants that will be hard to get off and start other issues

But you know poor doctors need to save face so the depression thing fits well

If they had that pain they would be depressed to

BUT they don't get is

Fatigue

Depression

IBS

Comes after all the pain

But hey why not skip over the real issue and treat an easier one

You may also like...

Nervous Lap won't find anything.

I just want answers to the pain/discomfort/fatigue I've had over the past 5 years. I am getting a...

Nervous about possible lap

I think the cerazette had worked as I have had very minimal pain in weeks. I'm now starting to...

ESA assement, nervous!

because I'm not physically disabled, I'm so nervous especially with Christmas coming up I'm scared...

Laparoscopy tomorrow, feeling nervous now

to kick in. I had to have my second blood test today, ugh it was painful. Last one I had 2 weeks...

Getting nervous

hopefully, it dsnt help I'm having my period right now with labour like pains I honestly wish they...