Am I crazy?

After being in and out of hospital over the last three months the doctors finally realized that it was time I was referred back to UCLH to see the specialists, as none of the local hospital doctors have a clue what to do with me.

I was expecting to have an incredibly long wait as it took several months for me to be seen by UCLH last time, but only yesterday I received an appointment letter for the 13th March. Yay right? Well not quite. I know this may sound crazy, and it most likely is but I am terrified of my appointment. I am terrified that the doctors won’t take me seriously or will dismiss my symptoms. After being told for several years that nothing was wrong with me and that it was all in my head it is hard to remain confident that won’t be the case again. I know I have endometriosis, UCLH know this, I had biopsies that confirmed it, and I know based on my symptoms that it has come back. Yet in the back of my mind I have this fear that when I see the specialist I will be told all the rubbish that the useless gynae doctors fed me over the years. That I will be left to continue in this agony because the doctor might not believe me.

This is what years of misdiagnosis and poor doctor treatment leads to for an endometriosis sufferer. They face constant self doubt and anxiety over seeking further treatment and support, for feat that they will end up back to square one again. Nobody should ever feel that way about their health, no girl should be made to feel like she is crazy. I hope one day that there will be short diagnosis time and no girl is made to feel like what she is going through isn’t real.

Kerry.

Whats new?

So since I last posted quite a bit has changed. I am now into my second year of study, a miracle considering I struggled with 4 consecutive surgeries in my first year. I still managed to pass, which is something I am incredibly proud of. I do feel a bit like a I am constantly swimming against treacle with my studies, due to the endometriosis. I get ahead, then take two steps back and end up behind playing catch up as I might end up in hospital for a week or be bed bound for several days. I try not to let it beat me though and I just keep swimming!

My health has dramatically worsened over the past year, my symptoms had improved after surgery at UCLH but sadly they returned quite quickly and I am now worse than I was before the operation. I am spending far too much time in and out of hospital with doctors who have almost zero knowledge of endometriosis and whose bedside manner is just appalling. One particular problem I have been having is horrible horrible bowel pain, it comes in intense waves of absolutely excruciating pain that makes me go dizzy and see stars. I have always had this symptom ever since I started my period but lately it has become far more frequent, which with it being the worst type of pain I get, is not good at all.

This worsening health has meant that I lost my job, something I was very upset about as although working was difficult especially with how ill I felt, it gave me a sense of purpose and of course, an income. Money is incredibly tight yet I am too unwell to work, meaning I have now applied for the dreaded ESA.  I am already incredibly nervous about the whole process as I am aware of several people who get turned down on the basis they are apparently fit to work. Due to the varied nature of endometriosis it isn’t classed as a disability, making it harder for girls to claim. I can understand this to some extent as not all girls with endometriosis suffer equally, but there needs to be a system in place for those of us who do. The varied nature of endometriosis also makes it difficult to fill in the medical assessment forms or pass the medical that they make you undertake. Some days I can cook dinner and maybe go to the cinema or shopping, other days I can’t get out of bed and need help to wash or walk. ATOS believe however that if you have a day where you can look after yourself out of a week then you are capable of work. Which just amazes me! I have only just sent of my application but I will be keeping you all updated with my progress.

So that is just a very very brief little update about where I am at at the moment. All pretty grim to be honest.

Kerry

 

It has been a very long time…

So it has been a year or so since I last posted and the reason it has been so long was, I suppose that I didn’t feel like I was writing anything people might be interested in, but then I thought. What if me writing down all my experiences and ups and downs helped just one person understand or feel connected in some way with another endometriosis sufferer? Then surely it is worth it. With endometriosis awareness month in the very near future, March for those wondering, I thought now was a good time to delve back into the realm of blogging about my life with endometriosis, adenomyosis, kidney reflux and Fowlers syndrome and trying to be a ‘normal’ 25 year old.

I promise my next post won’t keep you waiting for as long as my last.

Kerry

x

 

Not just endo…Urology problems

As well as having my Endometriosis and Adenomyosis i also have a bladder dysfunction and kidney reflux. 

At the age of around 3 i became really really sick and my parents were quite concerned, gone was their little happy smiley girl, instead they had a pukey screaming monster child to contend with. One night when i was really sick my mum took me to A&E where they diagnosed me with a kidney infection, this scenario kept happening until i was eventually diagnosed with kidney reflux, the treatment was 5 years of antibiotics daily. 

Kidney reflux basically means when 1 or both of the ureter valves aren’t working properly, in my case the urine flows down to the bladder from the kidneys, but a small amount will go back up into the kidney which causes infections. Kidney reflux accounts for one fifth of kidney failure in children and young adults. In most cases it sorts itself out and after treatment there is no need for further assistance. 

However, in some cases is it a long term condition. During the same time as i was getting looked at for my endometriosis i started developing a lot of kidney infections, these plus endo made me one miserable girl! Due to my history of reflux i was referred fairly easily to a urologist who diagnosed me with kidney reflux and i was put on a daily dose of long term antibiotics. This helped and for a long time i didn’t think much off it, i got the odd UTI but nothing to serious. It wasn’t until 2011 that my problems flared up again, i had been suffering with a UTI which was being treated, when at work i found myself unable to go for a wee. I needed to go but still couldn’t. I drunk and drunk and drunk. The pain was now unbearable and i found my self in a rush to get to the local A&E department. Being a nurse student i knew not being able to wee wasn’t normal. I was catheterized and they drained 2litres from my bladder in 15 minutes! Your bladder should only hold around 500mls! So you can imagine the pain i was in. I was kept in hospital with the catheter for a couple of nights and put on strong antibiotics as i had urinary sepsis. I was discharged with the catheter for 5 days, i can tell you it was the most uncomfortable thing ever, a constant burning pain. Although not getting woken up to go for a wee during the night was quite nice!

When the day to have the catheter removed came i found myself sitting in a waiting room full of old men, seemed like not many women had urinary problems. I saw a lovely young male nurse who seemed rather flustered by having a girl not much younger than him come in with a catheter. We were both rather embarrassed when it came to having my urodynamics test. This involves placing a catheter in your urethra and a small probe into your, um, anus. Your bladder is then filled and you are asked to pee, while retaining the catheter and probe, into a monitored toilet. This shows patterns in your bladder. The results were sent to a consultant who i saw a while after, i was told that i do not empty my bladder fully and so i keep large volumes behind, thus creating kidney infections, as the stale urine sits in the bladder and due to my reflux gets pushed back into my kidneys. I was told i would need to self catheterize 2-3 times a day. This involves using a temporary catheter and draining away the left over urine. It is not nice and something i still find incredibly painful to do.

The problem was no one knew why i couldn’t drain properly. So i was referred to a specialist at the National Orthopedic hospital at Stanmore. Where i had to go through another urodynamics test, this time they filmed it at the same time. I can tell you now it is one of the most invasive and embarrassing procedures i have ever had. Try to imagine sitting with a probe in your bum, a catheter in your urethra, sitting on a high metal frame with a x-ray machine and 3 nurses around you filming you while you try to wee. Not easy i can tell you. I also had a MAG3 scan. The conclusion was that i still have kidney reflux and also have what we suspect is Fowlers Syndrome. This condition causes girls, usually in their 20’s to spontaneously go into urinary retention. What is interesting to note is that it is more common in girls with PCOS and Endometriosis. So that’s the diagnosis. 

I have been told to continue self catheterizing, and i have gone into retention several times since my origianal incident, i haven noticed that there is a pattern relating to my cycles in terms of my bladder pain and retention and it seems to be related to my period, which is interesting. I am currently on the waiting list to have a Sacral Nerve Stimulator put it, this is a electronic device that fits under the skin of your back and has a small wire that goes into your sacral nerve, it stimulates the nerve making your bladder go into spasm. Thus i should be able to completely empty my bladder without the need to use a catheter. Hurrah! 

I have added a few websites below with more information on the SNS and Fowler’s Syndrome that might be of interest. 

Kerry

x

WEBSITES:

http://www.fowlersyndrome.co.uk/

http://www.medtronic.co.uk/your-health/urinary-retention/device/what-is-it/index.htm

http://uvahealth.com/services/kidney-care/conditions-treatments/96905

My Story…Part 2

After having Endometriosis picked up during a laparoscopy for a suspected ruptured appendix my GP reluctantly referred me to a gynaecologist at the local hospital. Hurrah i thought, i might finally get some answers. How wrong was i.

When i went to see the Dr my symptoms were dismissed and even the proof that i had endo from the laparoscopy were ignored, apparently the surgical team couldn’t comment as they weren’t trained. After breaking down and explaining i couldn’t live my life like i was she decided she would do another laparoscopy. During my time waiting for the 2nd operation i was in and out of hospital due to the pain, i was told once that i had pelvic inflammatory disease from a STI. As you can imagine this was a shock as where had i caught a STI from? Turns out once i had been tested that i didn’t have PID at all. Every time i was admitted my symptoms were ignored and i was made to feel like the pain was all in my head. I once had a nurse refuse to give me pain killers as she said the reason i was in pain was because i was constipated. I was crying my eyes out and she still refused. Once the day came for my operation i was nervous but hopeful they could treat the endometriosis they had found previously and i would start to feel human, by now my job was really really suffering.

I woke up from my surgery to be told that no endometriosis was found and the all was no reason for me to be suffering the way i was. In my follow up appointment and several others i tried several different pills, and eventually was forced into having the mirena coil, something i really did not want. I had the coil fitted during a hysteroscopy, it was the most painful thing i have ever experienced, i fainted it was so bad. The week after it was inserted was one of the worst weeks of my life, my bleeding was at its heaviest and the pain was agonizing. It turned out i had in fact got PID this time due to the coil causing the infection. I wanted the coil out but the drs at the hospital refused. It wasn’t until a month of agony later and a second infection that my GP removed it. My pain settled straight away.

After being pushed around so much and getting no where with my treatment was leaving me feeling depressed and crazy, was it really all in my head? Enough was enough and i decided to go private, i looked around for a endometriosis specialist and found one locally. It was the best £150 i have ever spent. For once the consultant listened to my problems and instead of being set on a cause he decided to treat me as if it was endometriosis and see how i got on, he figured if my symptoms improved it was highly likely it was endo. He also told me that he thought i probably had adenomyosis also. Which is where endometriosis is inside the womb and it infiltrates the womb muscle. The treatment we decided was Prostap, a drug that puts you into a temporary menopausal state. It is a harsh drug with nasty side effects but we both agreed my quality of life was non existent at this point and i was willing to try anything. I was to take a low dose HRT called tibulene once the hot flushes etc kicked in. I left his office feeling great, i felt that my life could progress positively now i had his help.

I decided to re-apply for nursing and i started in the January, a month after my first dose of Prostap.

Overall i spent a year on Prostap, however i had that changed midway through to Zoladex due to the ‘cost’ the difference being £5. The Prostap was wonderful, my periods disappeared and my pain eased dramatically. However, when it was switched to zoladex my symptoms returned and i was once again in and out of hospital with pain. After demanding and several GP visits they decided to switch me back to Prostap. By now the damage to my nursing course was done and i once again had to leave my dream of a nursing career behind.

I came of Prostap in February as my and my partner are trying for our first baby. During all of my gynae problems i also had urology issues, which i will go into in another post. However my urologist referred me to a endo specialist at the endo clinic in London at University College Hospital. I was excited, finally some answers from someone that knows what they are doing. I had a scan while at my first appointment and it picked up i had PCOS and confirmed my private consultants thoughts that i did infact have Adenomyosis. My consultant agreed to do another laparscopy but was sadly once again dismissive saying that he doubted i had endo and even if i did it would be minimal and wouldn’t cause my pain. Well it is a well known fact the amount of endo someone has does not correlate to their pain, but anyway…I had my lap in June and was told i had endometriosis on my uterosacral ligaments and perotonium, my tubes and ovaries looked fine. I wasn’t told much after the surgery. I had my follow up a few weeks ago where i was discharged from my gynae despite still being in agonizing pain and horrendous bleeding. I was told that this was most likely due to the adenomyosis and the only cure for that was a hysterectomy. The endo that they found was lasered away.

In my follow up letter it explains that my endometriosis was stage III, something which surprised me given that it hadn’t been picked up in my previous lap and how i had been dismissed so many times.

So all in all from when i first saw my GP aged 15, it has taken almost 8 years to get an official diagnosis. Ladies, don’t give up fighting to find out what is wrong with you.

Kerry x

P.S this is just a brief history of what i have gone through, there were many tests, many scans, many doctors and hospital visits. I wanted to try and keep it as minimal as possible though as to not bog you down. I will cover other things in new posts.

My story…Part 1

This is probably going to be very long and boring but i will try and keep it simple. 

My problems first started when my periods began when i was around 13, from the moment they started they were heavy and painful. My mum told me this was normal and that’s just how things were. When i was 14 i fainted in a cookery lesson, dragging a carving knife with me and cutting my lip open. I fainted because of the pain i was in during my period. This now seems to be usual for me, fainting or being sick are sadly quite common during my period. It wasn’t until then that my mum started taking me seriously, i started the pill, microgynon which helped for a little while but i missed lots of time of school and really struggled to lead a normal teenagers life, but i continued this way for some time. It wasn’t until i met my ex bf, Russell, that things really started to become a problem. Sex was painful, really painful, and then one day i started bleeding heavily during sex and especially after orgasm. Russell wasn’t sympathetic and made me feel like i was a freak. My bleeding became heavy to the point i leaked all onto his white carpet and also through my tampon, pads and eventually onto a fabric chair at college. I have never felt so embarrassed in my whole life. The pain was unbearable and the bleeding became persistent despite continuously taking the pill. I went back to my GP who basically told me it was normal and i would grow out of it, i was to try a different pill and see how i got on. During this time i broke up with Russell, he was unsupportive and made me feel like a weirdo. 

Soon after i met Mike, my current wonderful partner. Mike made me realize that what i was going through was not normal. Bleeding for months at a time and bleeding during sex etc and agonizing pain that led to fainting was not normal. 

However i was still being ignored by my GP’s who dismissed my symptoms despite them interfering with my life. I was studying to be a nurse and had to give it up due to pain and depression. I become a healthcare assistant working in a busy A&E unit, i loved it but my health was really taking its toll. One day i woke up in agony and the GP referred me to the surgical team at the hospital as he thought i had appendicitis, after 3 days of lying in pain and waiting for them to decide what to do with me they performed a laparoscopy, my appendix was fine but they found Endometriosis. I had never heard of this disease before and the surgeons weren’t helpful either, i was told i had it and to go to my GP. Obviously i googled it and was quite clearly mortified. Words that stood out were ‘incurable’ and ‘infertility’. I was only 20 and felt like i would never have babies and my life would always be like this. It was strange though as at the same time i felt some relief, i finally had a idea as to why i had been in pain so many years, i thought i could finally get help…..

I will continue this blog post on another page 🙂 

Kerry x

Introducing Endometriosis

I am covering just the basics of endometriosis in this opening post so I won’t go in depth into treatments as I feel that they deserve there own pages.

So where do I start? The crippling periods at age 13, the painful intercourse at 17 or the chronic fatigue and exhaustion at 23?

I have a disease called Endometriosis, I know trust me it is as complicated as it sounds. If you want to say it it sounds something like this end-oh-mee-tree-oh-sis.

I will give you a brief run down of what Endometriosis is and some if its varied and painful symptoms.

So every month us women go through certain hormonal changes, the womb lining increases in preparation for a fertilised egg, if you happen to not be pregnant your womb lining will happily shed away and cause a week of crimson misery for most of us. With Endometriosis the cell reacts the same way but are located outside the womb, so each month the endometrial cells grow, then break down a bleed however unlike a period the blood has no way of leaving the body. Still with me? This process of growth and break down leads to inflammation, pain and in some cases a thing called adhesions which is basically internal scar tissue. It can also occur on the ovaries causing things called chocolate cysts, yup they look like big balls of melted chocolate, lovely huh?

Now lets just state what Endometriosis is not, it is NOT Cancer, it is NOT contagious and it is NOT a infection. Right we got that awkward bit out the way lets look at some symptoms.

There is a whole host of symptoms so I am going to list them, these are just a few that someone might experience.

Painful Periods/ovulation

Painful Intercourse

General Pelvic Pain

Heavy periods with or without clots

Long Periods

Spotting or bleeding between periods

Irregular periods

Chronic Fatigue and Depression

Some women also suffer bowel and bladder pain which can include pain on bowel movement, irritable bowels and pain after urinating often feeling like cystitis.

So how do you find out if you have Endometriosis or not? This believe it or not can take on average 10 years! 10 years, a whole decade! I know, I know control your shock. There are several reasons that it takes so long, endometriosis is often misdiagnosed as IBS, Appendicitis or even pelvic inflammatory disease. GP’s first approach is conservatively, monitoring symptoms and in most cases prescribing birth control to see if this helps the period irregularities or pain. However this is usually not a long term solution or even helpful for most girls. The next step in the diagnosing process is to get referred to a gynaecologist (Doctor that looks at your downstairs bits) this can also be disappointing for some girls as again a few doctors want to try conservative management before surgery. Ah yes surgery, the ‘gold standard’ in endometriosis diagnosis.

Surgery for endometriosis diagnosis is usually done by laparoscopy. This involves a telescope being placed through the belly button, another incision is usually made where carbon dioxide can be filtered into the abdomen, this bloats the belly so that the surgeons can get a good look around. A laparoscopy is done under a general anaesthetic and commonly for a diagnosing operation takes about 30 minutes and is usually a day procedure. If endometriosis is found during the operation the doctor may treat it while they are in there. Not all consultants will do this so it is worth discussing what they will or wont do during the operation.

So you have just had a laparoscopy and beentold your have endometriosis. You probably have lots of questions and fears about what happens next and how severe your endometriosis is. Endometriosis has 4 stages of diagnosing, 4 being the most severe and stage 1 being the least severe. One thing that is important to mention is that the amount of endo does NOT correlate to the pain or symptoms somebody may be experiencing. Some girls have severe endo and no pain where as other have 1-2 spots and are in agony. So the staging, this is complicated but I will make it as easy to understand as possible starting with the most severe.

Stage 4: Is the most severe of the Endometriosis stages. Here you would have would have many deep and superficial implants. Stage 4 Endometriosis also have large adhesions.

Stage 3: The implants found must be superficial as well as deep to classify in this stage. There should also be areas of scar tissue and adhesions that stand out prominently

Stage 2: Is said to be mild. The diagnosis is based on the discovery of small adhesions and areas of scar tissue as well as a number of small implants.

Stage 1: Is called the minimal stage. This means that the cases of endometrial tissue growth found outside of the uterus are few and isolated.

Obviously it is never as clear cut as that but it gives you a rough idea.

I think that wraps up this first post. I wanted to keep it fairly brief and cover the basics. I will be writing more in depth posts on treatment options etc, and also a post covering my endometriosis story so far.

Thanks for reading.

K

x