I am honestly in floods of tears writing this as I can't believe the way I have been treated. I have been bleeding now every day for the last few years. I have been put into chemical menopause several times which hasn't worked, I have had to fight, beg and plead for someone to help me. I have very little quality of life, I struggle every day in pain, my moods are so up and down with all the hormone changes. I have started to get heart palpations and have been referred to a cardiology clinic. I just honestly don't know who to go to anymore or turn to. I keep going for my little girl who needs her mummy and my husband who has been so patient with me but I want to get my life back.
I'm sorry this is so long but honestly this is the whole story. Any advice would be greatly appreciated as I feel like I am on my own fighting with all these consultants 😢 xx
So I have such a long history of being unwell and things are not getting any better. I feel at my wits end and have no idea what to do as I feel exhausted mentally and I really don't think I can fight the consultants anymore! If I wasn't living with this I honestly wouldn't believe it.
So when I was pregnant with my little girl 5 years ago I had a very difficult pregnancy. I was really sick every day and couldn't even keep water down. I was in pain and after an ultrasound early on they found out I had a large ovarian cyst. Due to the pain the consultant decided to do a laparoscopy to remove it but it burst. After another scan a few months later they told me I had a fybroid but they couldn't do anything about it until after my baby was born.
I had a natural birth and my baby was beautiful and healthy however she caused some damage and I unfortunately hemorrhaged and had to be given 2 blood transfusions.
I have always had really bad periods since I was young, heavy bleeding and excruciating period pain, sore back and mood swings. I tried every pill to help me but nothing seemed to work.
So the bleeding got worse and I was admitted to the hospital a few times after having my wee girl and consultant told me it was probably due to the fybroid and that it was growing. By this time I was also low in iron and anemic. I have had previous surgery’s in the past with my appendix bursting and having a hernia during which the surgeon perforated my bowel. I have also had cysts and division of adhesions. I have always felt like I was in a game of pass the parcel in hospital admissions as surgical said I was gynocology and gynocology said I was surgical. I kept always being told I was a tricky case and that all surgery would be very high risk due to adhesions. I literally begged for a hysterectomy as I couldn't cope with the bleeding any longer and they kept refusing.
I carried on in constant pain for many years seeing my gynecologist taking decapeptyl injections but they never worked when finally he suggested doing a fybroid embolisation, he said that we had tried all the medication he could think of and if I did this then he would finally be able to get me on the list for a possible hysterectomy but I had to try this first. I went ahead and had this in 2022 and when I woke up I had never felt pain like it. I had to stay in the hospital an extra night as I couldn't move my leg. I was discharged and sent home with dihodrocodeine and cyclozine. Recovery time was supposed to be a few weeks but mine took 4 months due to the internal bruising and pain. For me I wish I had never got this procedure done as every since then the bleeding, pain and symptoms have gotten worse. I felt pressured and bullied into getting this as he assured me he would put me on the hysterectomy waiting list. He did not do this I was later to find out.
So since this I have had several hospital admissions for heavy bleeding and pain and just had transamic acid thrown at me and then discharged. I have been in constant tears every time I have had to go to the hospital and my husband has had to physically force me to go. Sometimes I have been on the surgical ward and gynocology have refused to come and see me because I have an outpatients appointment with them.
After getting out of hospital again I was put on a medication called Tibolone. Now I did my research and it said that you shouldn't give this medication to people who suffer migraines with aura so I explained to my consultant that I had these and he said it would be fine. As he was the head of the department I trusted him and started to take them.
After taking this medication last March I suffered a mini stroke I firmly believe it was caused by this medication as nothing else was different. I was really unwell and took off it straight away. It has been a long road to recovery and I still have memory issues but I am finally back to work after being off 10 months. It was so scary for me and my family.
After this happened I genuinely couldn't take any more of being fobbed off by consultants. I have honestly had about 8 gynecologists in the past 5 years. There is no consistency with my care. I respect that covid has had a massive impact on the NHS and things are taking a while to get back to normal but I feel like it's ridiculous and more money needs to be spent on women's health.
I decided to do my research and speak to my GP who has been amazing and wishes that she could do more. I asked to get a private appointment for a surgical/gynocology specialist and she completed my referral. In August 2023 I seen her and at the time she was amazing, she listened I felt valued and heard. She was the first specialist that said a hysterectomy would be tricky but she would bring a colleague on board to help her and that would be safer. She recommended a new drug called requeo and I was to see how I got on. I explained to her that I honestly couldn't afford to go private and she moved me to her waiting list and said that I should be seen in a few months. My husband came with me for support and I honestly burst out sobbing that someone was listening to me and would get things done.
So I seen her again in October 2023 in a one stop clinic, I thought I was getting a scan done to see how much bigger my fybroid had gotten as my stomach is so swollen and I look pregnant. I took a friend for moral support and also because after the mini stroke I still struggle with my memory. I honestly felt like I was meeting a completely different person than before. Her attitude was very different and disappointing. She basically just said did I still want to go on the waiting list for a hysterectomy, she couldn't find my notes from my previous operations which could be an issue. She refused to scan me and said that if they new drug requeo wasn't helping then just come off it. She never offered me anything else and said my GP would give me more transamic acid tablets and an urgent hysterectomy would be around a year. She took my height and weight and said my BMI was a little high so I should lose some weight before the surgery. I was in shock at her attitude, she suggested the coil again as many others have done and I told her I really didn't want it and she rolled her eyes at me and said there was nothing else that she could do! She then told me she had other patients to see and this was just a 20 minute appointment and she had already spent 30 mins with me. I asked for a scan and she said did I want one and I said yes and then I left without one.
I was absolutely thunder struck by her attitude, I know people are busy but that appointment could have been carried out on the telephone. I honestly cried for about a week after this. I felt another person had let me down and this was not the person that had helped me before.
I decided to contact her secretary to explain that I was a little confused about what the follow up was as it was only mentioned that she would be in touch when I was further up the list. Her secretary was quite rude but said that she would pass the message on. I got a call a few days later saying that the consultant wasn't issuing a follow up appointment and that was it.
After speaking to my husband and parents I decided to pay privately for a scan to put my mind at rest. Scan results showed that not only is the fybroid getting bigger but I also have another overian cyst and signs of endometriosis.
I thought it would be best to report this to my consultant as she said she wasn't scanning me as nothing will have changed since last April and things have. I phoned secretary again and asked for her email so I could send over results, she said she would speak to her again after I sent results over. At the end of the day the secretary called to say consultant had seen the scan images and still doesn't want a follow up.
I have ran out of ideas. I'm so tired and don't want to fight anymore I just want help and support. I have to take dihodrocodeine and oramorph to manage the pain and anti sickness tablets. I can't take iron as my body rejects it and my blood count seems to just be okay even though I'm bleeding every day.
Anybody have a similar story to mine?
Any help, thoughts or suggestions would be greatly appreciated ❤️
I'm at my wits end !! 😭
Result from my GP
Has anyone gotten rid of endo with a hysterectomy?
Mirena coil & Laparoscopy - my current story
What the hell is wrong with me??!!!!! At my wits end and then some! Please help
