Sunday, January 6, 2013

Shireen's Story

Today I welcome Shireen to Your Own Kind of Girl. She blogs over at Endometriosis: my life with you about her experiences with having endometriosis. She has had a really rough time with endometriosis, trying out pretty much every single treatment and unfortunately, they have all failed so far. She is having surgery tomorrow and I am hoping and praying that this surgery gets rid of her endo and allows her to regain a normal life for a 28-year-old.

I always had terrible periods from the outset. And I mean terrible. I would be at school and flood without warning. It was so embarrassing but luckily the one time it caused a real problem was the one time my friends were absolute stars and helped me out. Without going in to details that is. I always thought this was normal though and it wasn’t until I started to have pain during sex when I was 21 that I realised there was a problem.

I went to the doctors in early 2005 thinking that the issue was related to the Yasmin pill that I had been on for a while. The doctor informed me that he didn’t think a contraceptive pill would cause problems like this and that it could be a number of things such as an ectopic pregnancy, cyst, STD or endometriosis. I was sent for a variety of blood tests along with STD checks and everything came back clear which is when the doctor presumed it was endometriosis over anything else.

I was referred to my local hospital to see a gynaecologist shortly after this and had a laparoscopy in August of that same year. The results were clear. I had endometriosis. That’s when my world fell apart.

I was put on a course of Zolodex injections for 6 months – one per month on differing sides of my tummy. I have to admit, as much as I hated the hormones, as much as I hated the exhaustive hot sweats, mood swings and depression, it did help. While I was on it anyway. At the end of the 6 months my gynaecologist referred me to a specialist at another hospital as he could no longer help me.

I met the Prof. in 2006. A tall man who casually sat in his chair and exclaimed “How can someone so young have such bad endometriosis?” on his first encounter with me. He had no explanation for me having this disease. I have no sisters and my mother was never diagnosed with it – though she suffered terribly with her periods also.

The Prof. sent me for an MRI scan as I was having a lot of pain in my bowels also but this came up clear. He then sent me for laser surgery and adesiology in 2007 to remove as much endometriosis as he could and to remove all the scar tissue which had decided to join all my insides together.

I was put on to Decapeptyl for 6 months which was injected in to my bum cheek and during this time I was put on to Livial HRT (Hormone Replacement Therapy) tablets. The HRT helped tremendously but I still suffered with the same hot flushes and mood swings. Again, the hormones didn’t help and at the end of the treatment I was referred back to the Prof. for further help.

The Prof. told me that my endometriosis was on my left ovary and in the Douglas pouch behind my womb. He showed me all my photos as well. It was a big shock to see what damage the disease had caused to my body. But it did look far better after the surgery. He told me that if things stayed clear like they were straight out of surgery then I should be able to have children. At this time my endometriosis was far better than ever before and though I was still experiencing pain, we decided to give my body time to adjust and settle before we took any further action. For a while I saw the Prof. for regular 6 monthly check ups and was put back on to the Loestrin 20 pill to see if this helped. It didn’t and in time I demanded another course of action.

My endometriosis took a turn for the worse during this time. I was put back on to Zolodex – this time with a side course of Livial HRT – and it was the darkest time of my life. If you’ve ever been put on to hormone shots then you will know what I mean when I say everything was cloudy. Every time I’ve come off a course of treatment there has been a particular time in each instance when I can feel the cloud has lifted and I have become myself once again. But at this point, the cloud was very much there and on several occasions, in my darkest moments, I did think about ending it all. My body was giving up on me. I wasn’t dying (and will never compare it to that) but my spirit was. I fell in to a hole of despair. I would cry constantly. Most times I was brave enough to hold it in until I had time on my own but then I would collapse in to a pile of grief. I wanted so desperately to know the answer to my burning question; over everything else, the one thing I needed was to just know if I could actually have children.

The pain at this time was so bad that I would regularly miss several days at a time off work. Sometimes it was so bad I would curl up on the bathroom floor and not be able to move for hours. Huddled in my tears. I was on anti-inflammatory tablets, strong painkillers and considered having my hot water bottle surgically attached to my tummy. It might as well have been attached for all the times I cuddled up to it. My hot water bottle became my best friend.

The Prof. suggested I have children or a hysterectomy. I said no to both. I wasn’t in a good place in my relationship to have children and was too young at the same time. And a hysterectomy was out of the question. At least without that I had a chance of conceiving. He suggested I give the coil a go. I said no on the grounds of the side effects and the thought of the horrible piece of plastic I would have stuck inside me. I wanted to give my body time to adjust from having had so many hormone treatments. I wanted to be me for a while. In the end he suggested a new experimental treatment of tablets which were usually given to women with breast cancer. I was sent for a bone density scan in 2009 but unfortunately, from years of hormone treatments, my bones had become too brittle to take the new treatment. I was then diagnosed with osteopenia – a precursor to osteoporosis. My only option left was the coil.

I had my Mirena coil fitted in February 2010. It was an awful experience. My doctor was very gentle, but I still ended up screaming out with the pain and bursting in to tears. It made me feel sick for months after and I lost a lot of weight. On the plus side, although the losing of weight was a plus side anyway, my skin looked clearer than ever and my libido was sky high. I felt on top of the world and although it didn’t stop my periods completely, I had very little pain.

I was finally discharged from the Prof. in the summer of 2010. It was the happiest day ever. After 5 years of treatment I had found something that worked. I WAS ME AGAIN.

It wasn’t until the beginning of 2011 that I began to have problems again. The pain around period time was coming back – I would bleed for weeks on end and sometimes this was very heavy. Sometimes as heavy as it was at its worst point (imagine, a super plus tampon having to be changed every 30 minutes for days on end). I was exhausted from it. But then it started to clear up again. All was good. Until the sickness arrived. I couldn’t eat anything because of the nausea, I was having terrible hot flushes again, my acne was back to its normal self and I would wake up with the pain from it in the night when my face brushed on my pillowcase. I had every symptom of pregnancy going but 3 tests eventually made me believe I wasn’t pregnant. I started to have heartburn which the doctor told me could be a reaction to my body being upset over all of this. The mood swings were back full force and I was so emotional, I would sob for hours every day.

I went back to my doctors and asked to be referred back to the Prof. to talk through my options. I saw him in November time and he put me back on to the Loestrin 20 pill for 3 months while I still had my coil in and told to come back in 6 months. Nothing changed at all.

In January 2012 I had my second bone density scan where I discovered that my bone density had unfortunately decreased - even though I had been doing everything in my power to increase it. I was put on to a course of Fosamax and referred to a Rheumatologist.

During the early hours, on 10th February 2012, I awoke and had a few sharp pains in my "cervical area". I thought it must be because I needed the toilet, but when I got back in to bed I told the boy that something didn't feel right. I couldn't put my finger on what it was or why I was suddenly feeling so bad. He suggested snuggling back up so the heat from his body would help but as soon as he touched me I started screaming. The pain was just unbelievable. I couldn't find a comfortable position and though the boy and my parents were trying everything they could think of, nothing was helping. In the end the paramedics arrived and I was given gas and air and taken to hospital. In A&E, I was given various painkillers but everything was making me sick so I was given an anti-sickness injection and then sent over to Gynaecology for more tests. After being given a wonderful Tramadol suppository, I was taken for an internal scan which showed a large clump of endometrium and as I was finally reacting well to the painkillers, I was eventually released that evening. I was told that my endometriosis had flared up as a result of stress. I was signed off work for the foreseeable future until things improved.

Over time my body became used to the painkillers I was on. These have had to be altered more than several times.

I decided to stop the Loestrin 20 pill after the 3 months and had my coil taken out at the beginning of April. Although I'd been told the reason for the flare up was stress, I had started having other problems. Embarrassingly, I had started wetting myself. Not a huge amount. But enough for me to be mortified. I had asked one doctor about it and he suggested it was down to the swelling but when it didn't get any better I mentioned it to the doctor who removed my coil and she said she couldn't see any reason for it as my pelvic floor muscles were very tight.

I couldn't get my appointment with the Prof. moved forward so when I eventually got to see him at the end of April I was about at my wits end. I was seen by a junior doctor first who took down some notes, and when I mentioned about the wetting she said that there shouldn't be any reason for that - which was a really silly thing to say in my opinion. Of course there is a reason for it... I'm a 28 year woman - not an old age pensioner (though I have felt like it a lot recently!). When I went in to see the Prof. I told him outright what I wanted - surgery. I wanted all the endometriosis removed. Again. He said that I'd have to have another laparoscopy first to see what was happening inside my body.

My date for my surgery came through quicker than expected and I had a pre-assessment in mid May and then went in for my laparoscopy at the end of May.

It was supposed to be an outpatient procedure but I reacted very badly to the anaesthetic and had to stay in hospital overnight. I just remember waking up from my operation and being incredibly panicked and frightened and I burst in to tears. I felt very sick and my eyes were apparently all over the place and the pain was so intense it was unreal. I fell asleep for a short while and then was taken up to a ward to recover. Except, on the way I passed out and my blood pressure dropped and I was taken to another recovery room and put on a drip. After this I slowly came around and started to feel a little better. I was finally taken up to a ward at just before 10pm.

The Prof. came to see me the morning after my operation and explained to me his findings. I had been prepared to hear my endometriosis was worse, that I already knew without someone cutting me open. But I was not prepared for what i heard in any way. He told me that my endometriosis was "aggressive and extensive" and had spread. Previously, he had found endometriosis on my ovaries and on my Douglas pouch. But this had now spread and he found it on both my ovaries, my Douglas pouch, my bladder (which is why I was having problems with wetting) and diaphragm and it had stuck my fallopian tubes to my left ovary and then both of these to my pelvic wall (which explained why I was having problems walking and lifting my left leg). I was high as a kite on meds, but I was also heartbroken. He said that he had put me down for more surgery to remove the endometriosis but that we also needed to sit down and talk through what my options were - it wasn't just something that could be decided on there and then.

I met with the Prof. again in September. He explained where they had found endometriosis during my laparoscopy but also told me that they found it on my pelvic brim which I didn't previously know about. He said he would not be operating on my diaphragm because it's too close to my heart. I asked him if he had checked around my diaphragm to see if it had gone any further up in my body but he said he didn't need to because he knew it wasn't any further than that because I wasn't coughing blood. But, as far as I was aware, you only cough blood if the endometriosis is in your lungs...? And surely this only happens over time and isn't an instant reaction. He was pretty final on this answers though.

After a very long wait, I was finally given my date for surgery - 8th January 2013.

I know any improvement to my present situation is good - things can't get much worse than this, but I just feel like I'm going round in circles. Why can't I be given a treatment that works for me like other women seem to miraculously find instead of having to re-try things that previously haven't worked? I seem to have exhausted all options and no medical professionals seem to care that I cannot have a life while in this situation - I just have to continue sitting around, taking painkillers and waiting. I just feel like screaming with it sometimes. It's so frustrating not being able to get anywhere and seeing other women finding treatments that work for them. Why won't anything work for me? Why!?

I've had repeated breakdowns since all this has happened - I'm finding it very difficult to cope and have been put on to antidepressants. The boy has been absolutely phenomenal, sitting with me when I'm sobbing at 2am, talking me away from the edge of my hole, chauffeuring me to and fro (since I cannot drive or walk far with the pain and the tablets I'm on). But it's still there, the heartbreak, the pain, the uncontrollable emotions of trying to face up to the fact that things are worse and no matter how much you try to be positive and put on a big smile, it still hurts. It's difficult putting your whole life on hold at 28, losing the career you have worked so hard for and being forced in to seeing who your true friends are. I certainly lost a lot of people this year.

Everything lies on this surgery working for me. Everything. Getting back to work, driving again and getting out to see people. Finally moving in with the boy like we had planned to do by May this year. But I just have to wait and see how it all goes. At the moment, I really have no clue as to what 2013 holds for me.

If you would like to follow my journey and find out what happens next then you can find me over at where I blog!

Thank you for reading my story.

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