AWAITING ENDO DIAGNOSIS

[MommaSoph]

Hi, i am awaiting Gynae letter after referal from GP last week. 3 years ago went for internal and external ultrasound.

My symptoms are

Lower back pain - constantly only going but worse when on period

10-11 days a month i am a write off. Nausea, Migraines, Anxiety, Stomach cramps really severe, really really bad pains like contractions. The Nausea is unreal and usual 3-4 days per month.

Really bad womb and ovary pain, hard to describe but can feel my ovaries twinging etc.

The stomache pain feels like its in my womb as opose to an upset belly if that makes sense,

I keep a diary and its been 10-12 days a month and its really bad pains. Before during and after. Also i suffer migraines either before during or after period without fail on horrid migraine a month, As well as the usual daily headaches that can occour.

I have been told by GP periods are suppose to be painful, i argued not normal to feel this way and pushed for a referal for ENDO. 3 years ago the scan was to check for fibroids and ofcourse nothing came up.

Something is not right., I am 36 years of ages, suffering the last 5 years tbh and its getting on my last nervew now.

How long will it take to get an appointment with Gynae ( i am based midlands)

[MommaSoph]

Oh also mt periods are usualy SUPER HEAVER 3 days long 4 tops

[CryBaby91]

Hi MommaSoph

I wish I could tell you how long, but sadly I'm not sure as I'm West Yorkshire. I do know that I waited 6 months from the initial GP referral, during covid. Then I had a wait of around 1/2 months for my preoperative assessment, and finally around 56/57 weeks for my diagnostic lap. So it was a long haul! I was down as an urgent patient too, so I can't imagine how long it would be for non-urgent people doesn't bear thinking about tbh. Are you taking any painkillers or doing anything to try help with symptoms while you wait? Xxx

[TashaoftheWild in reply to CryBaby91]

I waited about 6 months after my referral and had to request a second ultrasound before they would send me to a gyn. After receiving my diagnosis, I had to wait 102 weeks for my surgery because of covid. Things were better for me immediately after my surgery but, nearly a year on, the pain is already starting to return 😩

[CryBaby91 in reply to TashaoftheWild]

Oh love im so sorry endo does have a tendency to reoccur, did your gynae discuss that with you at all? Yeah sadly I didn't count my first gynae referral which was over a year waiting for a phone appointment which was not only useless but actually made me cry. The gynae was a general one and had no idea about endo, claimed a clear ultrasound scan meant no endo and that thigh pain wasn't a symptom. Said it was mental health related and a lap would be pointless! So really it was around 2 and a half years of waiting because of a crap gynae at first, covid too obviously. But yeah, massively a long process! Xxx

[MommaSoph in reply to CryBaby91]

Yes I am ok painkillers to help but doesn’t do much I always feel tired and yesterday was ovulation day so ofcourse I have had a headache for 2 days and horrid cramps ! Feeling rough as usual and starting to forget what it feels like to be normal

[Frankie212]

I’m in the southwest but I’ve been waiting nearly 9 month and still no appointment for my first Gynecology app.

[Purpledisco]

Hi MommaSoph,

With me in Wales I was on the waiting list for 2 years for the first appointment, during covid. But, I didn't wait the full 2 years as I decided to pay private and was seen by an endometriosis specialist consultant and was seen within 2 weeks. 6 months later I had a letter for the NHS and brought all this information with me to speed up the process a bit.

Private isn't exactly cheap but if you are in a position to I would highly recommend to anyone to consider it atleast and seeing what options are available to you. I was surprised with how much support I received after going private. Sadly. (Nobody should have to spend extra money to be taken seriously in the first place!!)

I'm 26 and it has taken me 10 years overall to see a consultant. I'm still waiting for Laparoscopy surgery for a full Diagnosis and considering paying for a private MRI for more insight before surgery. (Might be located in the bowel and unable to see on ultrasound)

[CryBaby91 in reply to Purpledisco]

If you can push for this I really would do, I've had my diagnostic lap and they found stage 3 moderate endo with a thick band of adhesions round my cesarean which fused my anterior wall to my bowel. I'm still having some bowel issues and pain in my diaphragm and kidneys, and found out through research that deep infiltrating endo might not be seen during a lap. I wish I had pushed home the MRI more. Xxx

[Sammyjam]

I am also in the midlands I got diagnosed in March/April I got referred to a endo specialist and received an app for October however I have just been told he’s out the country till April next year so I need to now request another referral to an endo centre in birmingham however my initial diagnosis was done quick as I was an emergency case for investigation but once diagnosed with endo was put on the back burner.

[laura98]

I was referred by my GP May 2021 and have only just been contacted for my gynae appointment which is on 6th September, so that’s 1 year and 4 months.. just for an appointment. I’m in the north west. Once you get your referral letter through it may be worth giving them a call for a rough idea of how long you may be waiting, it seems to differ a lot depending where in the country you are x

[Kit6667]

Sorry your suffering, its awful isn't it!! Im in Midlands and have been waiting since January for gynaecology appointment, still haven't got one!!

[Ronsk]

Hi

I get those twinning pain, like a sharp searing pain, I have several cysts on both ovaries..I've suffered pain during ovulation and period, however only recently also getting pain the week after my period coupled with regular urinary frequency, like every 30 minutes,almost like my bladder is irritated, I know I had spots of endo on my bladder several years ago so I can only imagine it's worse now. I have an ultrasound scan this morning to check for fibroid. However the last scan they couldn't see much as there is no free movement within. Considering the coil again soon so hopefully it'll get me off some painkillers.

[MommaSoph]

Ovulation day yesterday and starting to wonder what it feels like to feel normal as I Jusy always feel like shit. Tired today and 2 days headache and horrid cramps and back ache . SoDone and feeling fed up again . Yeah I expect a long wait on the nhs I don’t think I can afford private