Struggling with getting a diagnosis

[Cazaroth]

Hello all! I am new here, just joined today. I have been having symptoms for approximately 5 years now. I've seen many doctors over the years with complaints of pain. I have seen two specialists. The first specialist told me that he 'thinks' I have endo behind my cervix but would need to do a laparoscopy to be sure. He changed his mind during the time it took for me to get changed after my examination to pushing me into getting the Mirena coil. I do not want this, I have done my research on this and it doesn't seem like a good option for me. He also prescribed me with tranexamic acid, which I have explained that both my Mum and her Mum had thrombosis. (It is also how my Mum lost her sight).

The symptoms have gradually gotten worse, and I didn't agree with the first specialist, so pushed to see another. This time (I went three weeks ago) I listed my symptoms, which are as follows:-

Discomfort in certain positions, pressure sensation and pushing on the bowel.

Usually a couple of days after intercourse I get aches and pains in cervix and bladder area that lasts for a few days.

Extremely painful and heavy periods.

Irregular periods which used to be very regular.

Sometimes during my period, I can go between getting old blood, heavy normal blood colour, and a lot of clotting.

My cramp lasts the entire duration of my period.

Every other month I get cystitis/UTI symptoms, the month after that is where I get the really painful periods.

Severe headaches/migraines that last for days just before I am due on.

I get bad bloating almost every day.

Stomach pains, aches and pains in womb and cervix area, sometimes I get shooting pains, others the pain is a dull ache and travels around these regions.

My orgasms are quite painful these days!

I get chest pains and digestive issues

Fatigue and exhaustion feeling (I also have fibromyalgia)

It took me crying at this specialist for her to 'examine' me, which wasn't much; I'm not sure what you would have been able to see in my cervix with just a speculum!

She told me that I 'just have heavy periods', and that I need the pill (she pushed the Mirena coil on me again) she also prescribed again tranexamic acid. I apparently have to try hormonal intervention for 3 months before she will do anything else.

I am seriously at the end of my tether here, I am struggling to function. The pill is making me miserable and it hasn't reduced my symptoms at all. (I also told her I was taking the pill and it didn't do anything for my periods) I just feel like no one is listening to me. I am trying to see if maybe I need to find an endo specialist, as I do not feel like anyone is listening to me. It is really getting to me now. I have been on some support groups on facebook for a number of years now, but because my post is long no one wants to read it and comment. I am keeping fingers crossed I get a reply this way.

I'm sorry it's long and waffley but this is where I am at right now.

[L1994]

Hi Cazaroth. I feel what you are going through. I have been having issues with belly pain for a couple of months now. Like I have an off tummy every day. I had removal of cervical cells in Feburary and feel like i have had ongoing problems with my periods and strange bleeding. The Dr's don't seem concerned with me. I had the implant removed about a month ago as they believe that was causing my strange bleeding. Only had one period since that being removed. They just put me on omeprazole for acid. What kind of pains are you having on a daily basis. I am having like period pains every day. It's strange like i have feelings of being bloated but yet pains under my ribs and then I think i am so tense everyday that it's making me feel worse. I don't know. Its so confusing. I went through days of feeling nauseous a couple of weeks ago. I have felt pain in pelvis when needing to go to the toilet like a pressure but not all the time. Have you had any pains all around your belly or just located in one area. Wish I could give you some sort of answer but struggling my self also. Just don't know how to turn to the Dr's my self as there are so many symptoms that I can't explain.

[Cazaroth in reply to L1994]

I have gastro issues too, had them for around 9 years now 😞 omeprazole doesn’t work for me, I take lansoprazole now. I’ve also had pre cancerous cells. And hpv! Still got it after two years! 😔 I’ve just had my smear today a year after for this reason, I bled a lot and I’m in agony so I feel your pain! It’s so frustrating going through this. How long have you been trying to get a diagnosis for? I hate that no ones listening 😢

[L1994 in reply to Cazaroth]

I have only been bad with belly problems for a couple of months now. I also suffer anxiety. I was diagnosed with anxiety 6 year ago. But I had managed for about 5 years OK. Then In September last year I got referred to colposcopy as I went to the Dr's over my periods being longer than usual. They done a pelvic examination and said I had ectropion cervix so I went for my smear and came back high grade cell change and hpv positive. Found cin3 from biopsy. Now since the biopsy j had bleeding for a long time. Then had my cell removal on 10th Feb. I bled for about 9 weeks had my first normal period in May. Since then my belly pains have been every day just feeling of constant off belly. I am tracking my periods and one cycle was 50 days long and I also had a period then light bleeding a week later and also a brown discharge when i would stain on the toilet. The Dr put this down to my implant so had the implant removed since having the implant removed my cycle was 37 days long and not had bleeding between my periods I did have a bit of brown discharge and bleeding when staining on the toilet the day after coming off my period but I have just constantly had pains in my belly. Under my ribs in middle of my belly. Bloating and also what i am getting is bile when I wipe from having a number 2. I found I was feeling nauseous every day and on and off for a couple of weeks. I told this to the Dr a month ago and that's when they put me on omeprazole. I have just finished my course of omeprazole now. My Dr's keep thinking it's anxiety causing all of this but I think it's all this causing my anxiety and feel like i am getting ignored due to this covid. They seem to push you out the door as quick as they can. My Dr says my symptoms are alot to take because there is so many of them. I still haven't been able to get my repeat smear done after my cell removal as j have had bleeding every time they made me an appointment and the last one they had to cancel. I was supposed to have this repeat smear on 10th August but now I don't know when I will have my next appointment.my Dr's seem to be waiting to see what this smear shows before looking further. Have you had an ultrasound done by any chance. I think my Dr's are referring me for an ultrasound if my symptoms are still happening after the omeprazole xx