2018 was a rough year for me, I had multiple stays in the hospital and my health got worse and worse. The positive I guess was getting the diagnosis of 2 conditions.
At the start of 2018, I was struggling with the coil that was fitted in November 2017. I had been heavily bleeding since it was fitted, and having allergic reactions every two weeks. I made the decision to remove my Mirena coil in February. I thought this would help it stopped the constant heavy bleeding but nothing else.
In March I had my appointment with my gynae consultant put back again with flare-ups that were getting worse and worse with every month that went past and the allergic reactions still happening I decided I had to see the Head consultant in my area for endometriosis. I paid £150 to see him privately for about 15 minutes consultation. But it was worth it, he agreed my condition was very bad and I needed a diagnostic lap before removal of endometriosis. He also wanted to do an MRI to also give a better look. He wrote to my hospital to recommend this and I was put on the waiting list for both surgery and MRI.
In May I had pain that was getting worse and worse. I went to see my doctor who referred me for blood tests. But a few days later I woke up on a Monday and was in really bad pain My period was also 5 days late. I went to my doctor again who phoned the hospital and booked me to go to the surgical assessment unit. They were worried about it possibly being an ectopic pregnancy. blood tests came back and it wasn't a pregnancy but possibly linked to my endometriosis, so I got sent to the gynae ward. They gave me painkillers and requested ultrasound and MRI. That night I got worse, I was light headed and dizzy, they checked my blood pressure it had dropped to 80/50 they all started to panic and called the on-call doctor. it took 3 litres of fluids to bring my blood pressure back up to what is normal for me. I often have a lower range blood pressure 100/70 to 110/80.
On Tuesday I had my ultrasound they said it didn't show much just some endometriosis on my right ovary. I stayed in the hospital as even though I was on a lot of Morphine I was still in a lot of pain. They kept chasing my MRI referral, but still nothing.
Wednesday I was still in a lot of pain, they requested a pharmacy specialist to come and talk to me about painkillers. In the afternoon my gynae consultant came up to see me. He wasn't working that ward but he had been contacted re-treatment plan so knew I was in and came to check on me. This was amazing, he talked me through what had happened apparently the ultrasound had shown a large burst cyst and a lot of free blood in my abdomen. I was shocked as they had told me nothing was wrong, but this explained the amount of pain and my blood pressure dropping so much. He talked me through future options but said hopefully the MRI will give more results to make a more informed choice.
Thursday I managed to get my MRI and then reviewed by a pharmacist. they decided to try Oxycodone and see if it helped. It helped more than morphine but I still had a lot of pain. The doctors came to talk to me and said I was a bit of a problem and hard to treat (due to my other health conditions) and was making their jobs more difficult. I was discussed and so unhappy by this comment, I can't help my health conditions a would certainly pick an easier option if I could.
Friday they said they had my MRI results that showed Endometriosis but not too bad and that was it. they said they would discharge me and I should see my consultant for further treatment. When the nurse gave me my discharge papers it showed I had a lot more than just some Endometriosis. My womb was stuck to the peritoneum layer, the right ovary is attached to the back of my womb, the womb is attached to bowel and other pelvic areas, and I have adenomyosis. I cried What an incompassionate way to get a diagnosis. I was sent home with oxycodone and bed rest. I also had low iron and had to take iron tablets, it took me months to recover from this.
June I ended up have a very bad allergic reaction that started with a rash and progressed to affect my breathing. First I was given antihistamines, and steroids but my breathing got worse. I ended up needing to go to Resus where I need adrenaline to get the reaction under control.
In July I got to see my consultant again and he said I still needed a diagnostic lap first to see how badly the bowel is affected and where else the endometriosis is as MRI didn't show endo on bladder but he thinks it probably is on there too. He also said I had quite a few cysts on my ovary they are small at the moment ranging between 1 and 2cm. He agreed that a hysterectomy would help with the Adenomyosis, but wants to try a keep my ovaries if possible.
Then in September I finally had my allergy testing. I got diagnosed with "Chronic spontaneous Urticaria". They explained that my body produces too much histamine whenever my body is under physical and emotional stress. I got put on 2 different medications to try and keep the reactions at bay, and extra meds for when I have a reaction.
My endo pain has been getting worse and worse, with more and more pain. In October I started to get pain just under my ribs but inside, not muscular. My GP thought it may have been my Liver or gallblader as on examination thats what it showed. He referred me for an ultrasound and in November they checked everything liver kidneys, gallbladder and stomach. They said its probably very likely that I have Endometriosis in this area.
Ending the year I have pain when I eat unless its a small meal. I Have pain every day that gets worse the more I do. I am still having regular urticaria attacks but the serverity is less. Having been put on the wait list for a diagnostic lap In March I am still waiting for this op. It's frustrating it took 17months to get put on the list, now over 9 months and still no lap, and I know that the wait list for hysterectomy is over a year. which I won't get put on until I have the diagnostic op. It's looking more and more like I'm not getting hysterectomy and endometriosis removal until some time in mid to end of 2020 maybe even 2021. I'm really struggling with the idea of being left to suffer for the next year or 2, with no relief at all.
2018 was a hard year and as I see everyone writing about that this year is going to be the best year ever, I struggle because on the 1st of January I felt very unwell and had pain in my breast. I went to my doctor on the 2nd and was told I have mastitis. I'm not breastfeeding but I have suspected high prolactin. I still have milk even though I stopped feeding my daughter 11months ago. The doctor put me on 2 different types of antibiotics, one is a very strong one and has made me feel quite unwell, so even though the antibiotics are helping the infection I still don't feel much better. This was not the start to the new year I was expecting and I hope it's not a sign of things to come. Hoping you all have a happy and healthy 2019.
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