"In pain, waiting for endometriosis treatment"

About: University Hospital Of North Durham / Gynaecology

(as the patient),

After failing to conceive for 2 years, my husband and I were referred to our local NHS hospital for fertility check-up, that was June 2010. We did a series of tests including HSG procedure to test the patency of my fallopian tubes and they found out that one of my tubes was blocked but they didn’t explain what was the cause of this.

At our October 2010 appointment, we spoke to the nurse specialist who told us that we should try to conceive naturally because one of the tubes is still working and we are not eligible for IVF.

At that time I already feel on and off pain on the left side of my tummy, so the nurse arranged for another appointment in November and told us not to worry for it might be just some trapped dye from the HSG procedure.

In confusion I missed that appointment, instead of going in on Tuesday to the hospital, I came in Wednesday. So another appointment was set for January 2011 for ultrasound which revealed a large endometrioma on my left ovary. They also took a sample of my blood for tumour marking etc.

At this time the pain also intensified so that I took sick leave from work for one week and another 3 days at the end of the month. Everyday the pain just worsened, so that I had to take painkillers every 4 hrs.

To my disappointment our next appointment to the hospital is again another 1 and half month. So we went to our GP who also couldn’t do anything but just prescribed me with stronger painkillers.

In February the Consultant's registrar discussed with us the result of the ultrasound and result of my blood test. No discussion about treatment. She said that we have to wait because some ovarian cysts will just go away after a few menstrual periods.

I've been to my GP a couple of times seeking help on how to manage the pain and they just prescribed me as usual stronger painkillers. I’m in agony all the time 24/7 seven days a week non stop, so I'm also taking painkillers non stop.

In March I've seen the same doctor who explained the result of my ultrasound and she discussed with us the treatment options and we decided to do laparoscopic surgery to remove the ovarian cyst. It was scheduled on May 2011.

At this time I can no longer go to work because of pain. I work in a nursing home which requires physical strength and manual handling of residents.

I just feel so depressed because of my condition and so desperate for treatment. Even the simple task of walking or prolonged standing gives me pain.

I developed all sorts of symptoms like shooting rectal pain, painful defecation, back pain, pain on my legs and thighs, burning sensation in my urinary bladder and feel severe pain when I empty my bladder. I also start to feel pain on the right side of my tummy. But everytime I go to my GP they just tell me to wait for my surgery. I feel so isolated and neglected.

In May 2011 I was in the hospital for my laparoscopy as day patient. That was the first time I saw the supposed to be my consultant in that hospital. They didn’t talk much, instead they told me that they’re going to remove my left ovary. I was so scared and asked them if they could try to save my left ovary.

When I woke up from anaesthesia and recovered, the nurse wanted to discharge us straight away with some painkillers and an appointment card with a date in July. I am so worried and emotional because of the fear that they might have taken my left ovary or both. When we ask the nurse what they have done during the operation she said she don't know, so we demanded to see somebody who could explain what happened during the operation.

We waited for almost one hour before a doctor came and told us that they haven’t done anything. They said that they have taken a look inside and discovered that my endometriosis was so complicated and severe (stage 4) that they're afraid to touch it or they might puncture my colon. They couldn't even see the ovarian cyst because some of the organs were stuck together.

I cried my eyes out, I just couldn't believe it. I have waited and waited and waited and now they can't do anything?

I just lost the will to live, thinking about the pain that i will have to endure again in the next few hours. I was so devastated I just wonder why they put me as day patient and why they are handling my case, if they are expert or specialist?

After 4 days I managed to see my GP and ask him if he could help us. But what am I supposed to expect from my GP? There was no mention about alternatives or options and he said he will write to my consultant. We manage to see the same consultant in June and ask if we want to be referred in another hospital or we want to be treated in the same hospital under same consultant.

I said I want to be treated in a hospital that will give me quicker treatment. Then they said they will talk to their colleague and inform me as soon as possible.

But after 2 weeks no call as what they promised, when we phone the hospital we were told that the consultant was on holiday, and the next time we phoned again no one will talk to us because the secretary was also on holiday. So we complained to PALS who gave us the news that another consultant will be looking after me, but he's not going to do surgery on me and instead he will put me on hormone treatment.

I am so confused. I just don't know where to go. I need surgery. I don't need hormone treatment. I want the large ovarian cyst out. I want somebody who really cares.

Then I was taken to emergency unit for severe pain in June, but was discharged shortly after I was given morphine. The doctor attending me said that I have to go to my GP and ask for emergency referral if I want to see a consultant.

I really don't know what to do. Everywhere I go, I feel that these medical professionals just turn their back on me. I feel so neglected and depressed. I just want to end this pain I'm sufferring but how? My husband and I are on low incomes and we don't have health insurance. We also don't have enough savings to fund my private treatment.

It's almost a year now since I complained of this pain, almost 7 months since my initial diagnosis and still I don't get any treatment.

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