2 years in and we're still faffing about

[Dex76]

Hi everyone,

TL:DR daughter having symptoms for 2 years, drs being very dismissive saying it's normal cyclic pain. Diagnosed with PCOS.

I'm the mum of an 18 almost 19 year old girl who I am positive is suffering from endometriosis. She was diagnosed at 16 with PCOS and put on the pill.

Since then, she's had a myriad of symptoms and has been treated for IBS.

She has very sporadic periods. Her weight has ballooned and she is in constant pain.

Her symptoms are:

Irregular periods (almost non existent)

Chronic pain (she has passed out on a few occasions)

Urinary issues - she reports a strange burning feeling but did not have a UI when she saw the Dr.

Back and leg pain

Headaches

Fatigue

Bowel issues.

Strange sporadic reaction to eggs (cramping, belching etc)

The drs keep saying it's normal 'cyclic pain'. She was referred to a gyn who signed her off and said endometriosis was unlikely.

We have a new nurse at our surgery who is wonderful and wants to get to the bottom of it and requested it be investigated. We went to the hospital and she had a UI scan, abdominal US and they attempted a transvaginal scan which they couldn't complete due to her intense pain- they wouldn't let me be with her even though she is a very young 18 year old, a virgin and was terrified. The results were all 'normal' but her left ovary was ' too deeply inbedded to scan but appeared normal'.

The nurse also requested an appt with the gyn but the Dr authorising thought it was unnecessary. So she has requested that again.

I would love for this not to be endometriosis but her aunt had it when my daughter was a baby so I recognised some of the strange symptoms.

We're at our wits end. My daughter has not left the house for 2 years apart from to go to college/work. She lives on the sofa wrapped in a fleece blanket with a hot water bottle waiting to see how bad the pain gets before taking cocodamol which she says doesn't ease it too much anyway.

Sorry it's so long! Any tips on where to go from here?

Thank you

[MidgetSammi]

Hi!

We were speaking on my post & I've just come across yours. I really feel for your daughter & I'm going to keep you updated on my situation as the symptoms are so so similar. She's right about co codamol it takes away the back ache type symptoms & the pulling sensation but doesn't touch the urinary symptoms & just knocks me out which my husband seems to appreciate haha will update you as soon as I have my gynecologist appointment on the 8th xx

[Dex76 in reply to MidgetSammi]

Thank you so much for replying. Yep, as a mum I feel totally frustrated that I can't help her and can see how it's getting her down.

We're waiting for our appt at the gyne so will let you know. I think they're quite dismissive of her because of her age so I'm going to have to be the battleaxe mum.

Hope you get some progress with your appointment. I'm sick of hearing everything is normal!

[Louiseboo77]

I feel your frustration for your daughter and understand you not wanting it to be endometriosis. I am probably near to your age rather than your daughter. I have similar symtoms that she has. I can't believe you couldn't go in with her for the examination. I was as same problem. He had to be the other side of the curtains but held my hand. Some of the things consultants and doctors can say is unbelievable and sometimes like they just don't understand the condition. I have endometriosis and adenomyosis and not allowed a hysterectomy that I do need. Wait for the doctors to say her weight gain is to blame like I have been told and I struggle to walk sometimes am often on the sofa with 2 hot bottles. I have 2 children and am lucky to have them. I wish you all the luck with it all and wish that your daughter finds out what's going on and sort things out for her to have a better quality of life. She is so young for all this. Take care both of you. Xx

[wanwood]

Just a thought, if you haven’t already mentioned that your sister received a diagnosis of endo it would be good to. A family history of a close female relative relative having it does increase the likelihood.

No other tips but your daughter is lucky to have you fighting her corner. I wish I had been diagnosed before my 30s! It will take time to get a diagnosis even if you are very proactive, which is not entirely a bad thing because the treatment options can be a lot of “pain” for little “gain”. xx

[Dex76]

Hi everyone, I haven’t been on in a while as I lost my login info and life got in the way!

My daughter had her scans at hospital kidney scan, pelvic ultrasound and they attempted a transvaginal scan, I asked if I could be with her as she’s a virgin and was terrified, they refused! She came out a while later, eyes red from crying and said they weren’t able to complete the scan due to pain, so they attempted to get what they wanted from a pelvic scan.

Fast forward to the des appointment to discuss the results. We were asked what they gynaecologist said...I said that’s what we were there for, the nurse who we saw said that when she looked on her notes they (the gp surgery) had deemed an appointment unnecessary!?!

Scan results: kidney function normal. One ovary presented normal, slightly enlarged but to be expected for pcos and being on the pill..the other ovary wasn’t able to be scanned but appeared normal. The nurse was perplexed and vowed to get something sorted. We made an appointment about another issue which I didn’t go to.

It was at this appointment my daughter was told one ovary is embedded in her uterus.

They now think she has irritable Bowel disease.

The nurse, who has been fantastic is leaving the surgery and her parting gift has been to finally get us referred to a private clinic, so we’re hoping for some progress. We’re going to see how this appointment goes (2nd may) and then change GP surgeries.

I will see how this goes but now after almost three years of going back and forth I think I’m going to have to turn into mumzilla.