4 years later and still no diagnosis. Please help!!

[leah_0600]

I wrote this four years ago...

‘I feel like I'm at the end of my tether with all of this so I apologise in advance for all the complaining I'm about to do and for how long this post will be... I just need to get this off my chest...

I've been suffering from pelvic pain for years, including horrendous pain during periods (feels like I'm having contractions!!), massive blood clots, leg and groin pain, a sort of left fallopian/ovary throbbing pain, very bad bowls during period (one minute constipated the next, the complete opposite- won't go into details!) nausea from the pain, fatigue to the point of missing work from feeling like I can't keep my eyes open etc etc.

Earlier this year I ended up in A&E because I'd honestly reached my pain tolerance- it was so bad, I was constantly throwing up because of the pain. I stayed in hospital for 5 days while they poked, prodded and tested me for all sorts until the pain got even worse and eventually they had to take me in for emergency laparoscopic surgery. In the recovery room, I overheard them talking about endometriosis (id never heard of it before then) but after I was told they'd removed a 2cm cyst and I had pelvic inflammatory disease caused by an STI (id never had one?!) and was sent away with 2 different antibiotics. No mention of endometriosis? Confusion number 1

My pain did not go away. At all. I went to my GP who told me I did not have PID as on my hospital notes it said 'congested pelvis'- apparently an 'archaic term' according to my GP. Confusion number 2

I was scheduled for an ultrasound 3 weeks later and the lady took AGES looking around my pelvis. She kept saying it was strange how she couldn't see things properly. I just let her get on with it, until eventually she said she'd found a 6cm cyst and wasn't sure if it was in my left tube. But I'd just had a 2cm one removed? Confusion number 3

A couple of weeks later I had my post-op consultation. She basically couldn't wait to get me out of the room until I asked her about my 'new' cyst and she looked surprised, started spluttering saying 'oh it's nothing harmful and it's 2cm'. She had no notes in front of her and the ultrasound showed 6cm? Confusion number 4

I obviously became distressed after this as I didn't feel like my needs were being met and I was still in PAIN! Strangely, this worked and she scheduled me in for a laparoscopy a MONTH later!!

On the day of my operation, I signed everything including knowing there could be complications, yes, fine just find out what's wrong this time! I woke up in the recovery room in the most hideous pain ever, and was told there were complications and they'd had to perform a laparotomy to open me up and remove my Fallopian tube which was scarred with adhesions and had got rid of the chocolate cyst. They also lasred a lot of adhesions around my uterus which they said were due to endometriosis. The surgeon even said 'wow, no wonder you were in so much pain!'. My pain since then has got a lot better (apart from a couple of days of my period which were horrendous).

Today: my post op consultation with a doctor I've never met before told me 'the biopsy of the cyst showed no endometriosis so you never had it'..... What?! Confusion number 5...

I'm so confused right now, all the relief (whilst obvious sadness) I felt knowing id finally got a diagnosis of endo and the pain all made sense now, to then be told id had a laparoscopy and a major laparotomy, had adhesions lasted off, a scarred Fallopian tube removed along with a chocolate cysts removed... All that and no diagnosis!!! And now I'm back to square one?

I know I should be pleased with the 'no endo' result and it's not that, it's just that from being messed around so much and from the lack of communication between nhs staff, gp and myself, to knowing my own body and how much pain I've been in... I do not believe what this woman has just told me.

Do I go back to my gp to be fobbed off again? Or worse, think it's all in my head (after all I've had done?) or do I request a copy of my health records to see what the heck is going on? Or wait till I start getting pain again? Or am I overreacting?

Thanks for any replies and thanks for letting me rant away, it has actually helped and stopped the tears for now! :(‘

Now it’s 4 years later, more cysts found (have a 2cm one that’s not budging but they won’t operate) been turned away from A&E countless times. I’ve finally found enough money to go private (consultation and diagnostic Hysteroscopy)

Can anyone give me any tips on how to prepare for this and what I should say/questions to ask based on the above? I’m really at the end of my tether now, I appreciate you taking the time to read this far!

[leah_0600]

Can anyone help me? I’m DESPERATE!!! It’s with an endo specialist xx

[BethanyAnn]

Hi leah_0600,

I can’t give you your answers unfortunately but what I can say from my experiences is that it’s always best to take copies of all your operation notes and diagnosis/discharge letters because it helps the consultant see how much you’ve already been through psychically and emotionally, especially if you’re going private because they may not have access to the NHS system.

Another thing that I’ve learnt is that if you don’t like one consultant then you CAN demand a second opinion whether it’s someone else in the department or even a different hospital.

At your stage, I would say that the most important thing to discuss with your consultant is if it’s not Endometriosis then what is it, and if they can’t find the cause of your pain then they must come up with a treatment plan that helps you live more of a normal life. I know you’ll want a diagnosis for peace of mind because I used to hate people thinking it was all just in my head but sometimes there’s mysteries even the best can’t figure out but the best medical professionals understand that treating the symptoms is vital.

Good luck xx

[leah_0600 in reply to BethanyAnn]

Thank you so much for taking the time to read and you’re reply. You’re so right. I’m going to go for a second opinion at a different hospital first and then I have a private consultation booked at the end of September. I just can’t go on like this. I really hope the next hospital doesn’t just send me off with morphine again. Even the morphine isn’t helping the pain right now. Thank you again for your response and I will let you know how I get on at the other hospital tomorrow xx