Ten tips for living well with endometriosis from the EUK Information Day.

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

Image result for endometriosis banner long

Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.

2- Specialist nurses can be a valuable asset in your journey.
If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to  advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.

3- You are the CEO of your body.
When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.

4- Exercise is your friend.
It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.

5- Endometriosis is a highly individual disease.
There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.

6- If you don’t ask, you don’t get.
Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.

7- Progress is being made to improve the patient journey….
During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.

8- …But conversely, lots of the old myths still exist!
Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.

9- Endometriosis is a life changing illness.
Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.

10- There is hope.
There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.

I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!

Love,
Claire
xxx

Adenomyosis: A one way ticket to hysterectomy?

Did you know that April is Adenomyosis awareness month?

april adenomyosis awareness

I was diagnosed with this disease in August 2014, on the same day that I was also diagnosed with endometriosis. It really wasn’t my greatest day- but it did explain rather a lot. Like many people I had never even heard of adenomyosis before, so I was very taken aback to find out that I have it. Adeno-what?! When I wanted to learn more about this mystery illness that had been wrecking havoc on my insides, a quick internet search revealed (rather depressingly) that adenomyosis a) is the lesser understood evil cousin of endometriosis (and that is certainly saying something!), and b) is a leading cause of hysterectomy.

This hysterectomy factoid really bothered me from the start. It may be some form of Stockholm Syndrome, but I am really attached to all my lady parts and am not keen to loose them. However, reading about the experiences of other women with the disease on internet forums made me feel like having a hysterectomy is an inevitable part of my future. They describe the disease growing stronger until it takes over your life. Now don’t get me wrong, I want all women to feel empowered to make the choices that are right for them, and if a hysterectomy is going to relieve suffering then that’s great. But for a long time I lived in a state of panic, like my uterus is a ticking time-bomb waiting to explode. I  tell myself that those joining support forums or having hysterectomies are those who have been worse affected by the disease, and may not be representative of the majority of women with adenomyosis.

I’ve gotten bored of living in fear and feeling that I have no control over what is happening to my body. I have written this post to answer some of the questions I am frequently asked about my experiences with adenomyosis, to try and figure out what may be waiting for me in the future, and to help raise awareness for this often debilitating much overlooked disease.

What is adenomyosis?

Adenomyosis is a benign chronic disease where the lining of the uterus (endometrium) grows into the muscle layer of the uterus (myometrium). This can happen diffusely throughout the uterus-appearing as little specks, or can lead to the formation of larger growths called adenomyomas.

adenomyosis

What does adenomyosis feel like?
Having endometriosis in addition to adenomyosis, I used to find it difficult to determine precisely which symptoms were caused by each disease. Since having my endometriosis surgically excised I believe I now have a much clearer understanding of the effects that adenomyosis has on my body. It’s important to note though that each person experiences of disease is unique- how adenomyosis affects me may be completely different for somebody else.

For me, adenomyosis feels like a red hot poker is being slowly stabbed into my uterus over and over again. This used to only happen during my period, but now it strikes any time in my cycle. It’s basically uterus Armageddon. The disease also leads to a dull but intense aching sensation which radiates to my lower back and thighs. Like many women with the disease I also experience heavy periods with the presence of many clots, some of which are very large. I once had a clot the size of an egg- it was horrifying. I’ve tracked my periods since puberty and they have certainly become progressively heavier and more painful over the years.

A myriad of other symptoms have also been associated with adenomyosis. I have certainly experienced many of them to greater of lesser degrees, such as fatigue, aching joints, bloating, and a general feeling of malaise. Adenomyosis can also compromise bowel and bladder function, lead to anemia (from the prolonged heavy bleeding), and has been tentatively linked to depression. It’s effect on fertility is currently unclear as there has been little research on the subject, and the work that has been done is often confounded by the women also having a diagnosis of endometriosis. However, the general feeling appears to be that adenomyosis can negatively impact upon fertility outcomes, we just aren’t clear precisely why or how this is.

Over time adenomyosis can also cause the uterus to grow, and it can become extremely enlarged. This leads to severe abdominal swelling, making the it appear as though the woman is pregnant. I’ve had strangers ask me if I’m pregnant. It’s really upsetting, especially if you’re worrying about your fertility anyway.

Yeah..pretty much this.

Yeah..pretty much this.

Who gets adenomyosis?
If you read any published source on this disease it is likely to tell you that it primarily affects women in their late thirties and forties who have had multiple children. However, evidence is increasingly emerging that younger women can be affected by the disease, even young teenagers. Explore any online forum for adenomyosis and there are many women in their early twenties affected. I’m affected, I was diagnosed at 26 at it had clearly been going on inside me for quite a while.

It is likely that this age bias in the scientific literature stems from the fact diagnosis often relies on hysterectomy, and that women in their forties who have completed child bearing are more likely to take this option/ or be granted permission to take this option by their doctors.

My take home message here is that anybody with a uterus could have adenomyosis. If you have concerns about this based on your symptoms speak to your GP and request a referral to a gynecologist.

How is adenomyosis diagnosed?
I was initially diagnosed with adenomyosis during a laparoscopy in August 2014. After I woke from the anesthetic, my surgeon spent a long time detailing the numerous organs my endometriosis had damaged, and then ended her soliloquy with ”and you have a lumpy uterus”. No further explanation was provided and the term ‘adenomyosis’ itself was not mentioned, which really annoys me.

Fast forward six months and I am mid way through a trans-vaginal ultrasound at an endometriosis specialist center when the doctor says ”…and you have adenomyosis”. She said this so casually, like it was nothing. I’d pretty much worked this out from my own research following the whole ”lumpy uterus” comment, but it was still a huge blow and I cried my eyes out totally melodramatically for the rest of the day.

A historical reason why adenomyosis has been difficult to overlook is that is required examination of the uterus post-hysterectomy for a definitive diagnosis to be made. However, progress with scanning technologies, particularly MRI, means that adenomyosis is increasingly being diagnosed  without the need for hysterectomy, and can be accurately distinguished from similar conditions such as fibroids or leiomyoma.

Obligatory stock photo of a woman with period pain.

Obligatory ridiculous stock photo of a woman with period pain. She isn’t swearing and crying?!

Is there a cure?
A hysterectomy will cure adenomyosis. Since it only affects the tissue within the uterus, removing this organ solves the problem.

It’s clearly great that we do technically have a cure, unlike endometriosis which has none. However, hysterectomy clearly isn’t ideal and a better solution is required which doesn’t take such a huge physical toll on the body or cause infertility. I am still hoping to have children soon, so ripping out my uterus really isn’t an option right now. Since I can’t use hormones (such as the pill or mirena coil) which can be used to help manage adenomyosis, I am effectively forced live with symptoms for the foreseeable future.

Getting worse each month. Image credit: The Wondering Womb

Getting worse each month.
Image credit: The Wondering Womb

What other treatment options are available?
Before taking the plunge and opting for a hysterectomy, there are alternatives you can try- that’s the good news. The bad news is most have limited success rates and lack rigorous scientific evaluation. Unfortunately, these techniques are also rarely recommend for women who still wish to conceive in the future, as they risk causing damage to the uterus. I have very briefly summarized some of the most commonly used options below. For more information check out the links here and here.

Endometrial ablation:  A procedure that destroys or removes the uterus lining (the endometrium). This prevents any further bleeding (or bleeding is reduced to light spotting) in the hope of preventing further progression of adenomyosis over time. This procedure is offered to women seeking to avoid hysterectomy, but is clearly not an option for women seeking to preserve their fertility.

Myometrial/ adenomyoma excision: If the location of the adenomyosis can be determined through scanning on MRI or ultrasound etc, then it is possible for the diseased tissue to be surgically cut out (excised). This technique is only possible if the adenomyosis has not spread to a high proportion of the uterus. Due to difficulties with defining the margins of the adenomyosis the success rate of this procedure is currently estimated to be less than 50%.

Myometrial electrocoagulation: This procedure has the ability to shrink  adenomyosis deposits within the myometrium. It is carried out during a laparoscopic surgery, and using electrical current in the form of heat to destroy the adenomyosis deposits. However, this procedure is deemed less effective overall than excision owing to the fact that it is difficult to determine when the current has completed it’s work, risking diseased tissue being left behind.

Magenetic resonance-guided focused ultrasound: This is similar to myometrial electrocoagulation, using heat to destroy adenomyosis tissue. However, it has the additional advantage of being more greatly focused so that less damaged occurs to healthy surrounding tissue. However, this treatment approach is fairly new for use with people who have adenomyosis, and further research is required to ascertain its full impact.

What treatments have I tried?
I was taking the oral contraceptive pill for 8 of the last 10 years. It certainly helped to suppress many of my symptoms, although the disease was still spreading inside of me. I am not currently taking any medication or undergoing treatment as I am trying to conceive. As a consequence I often worry that my adenomyosis is getting worse with each period.

Why are you so annoyed about this?
On a personal level I am so and upset that I have to battle with another disease (on top on my endometriosis, chronic fatigue, and depression) to contend with. It just seems so unfair, but I know that’s how life is sometimes, so I’m trying to deal with it as best I can. As with my endometriosis, I am constantly frustrated that nobody has heard of adenomyosis- which basically means you get zero sympathy. Not that I really care about sympathy, but feeling understood and supported makes such a difference to living well with any chronic condition.

The lack of awareness has a more significant and darker impact than on just myself and is so damaging to women everywhere; it means there is limited research funding, no charity to advocate for us (at least this is so in the UK), and treatment options that come with extreme side effects and/or impact on the body. When you Google adenomyosis, speak to your GP about it, or delve into the research literature you basically get this response:

doctor shrug 2

The unanswered questions about this disease are fundamental and numerous.

This simply isn’t good enough. I even had to explain to my GP what adenomyosis is! I mentioned to a fellow endo sister that I have it and she replied with the perfect and sensitive comment: ”I am so sorry.” Not ”What’s that?” or ”I think my cousins sisters aunts daughter had that!”, or a <silence, blank expression>. Her response actually took me by surprise, and I realised it’s because I have never really received any compassion since my diagnosis, nor given any to myself.  Most of my family and friends can’t even pronounce adenomyosis. Seriously- if you want to support your loved ones and at least appear interested LEARN TO PRONOUNCE THEIR DISEASE please people!

We deserve so much better than this state of affairs. There are so many of us fighting adenomyosis on a daily basis in relative silence. We will continue to do so, and if I am brutally honest at times it’s pretty difficult to hope that things will be better for us any time soon. April is Adenomyosis awareness month, and I am finally ready to start speaking up. Are you?

Where can I find out more?
These resources have all proved useful to me for researching about this condition.
Review article by Taran, Stweart, & Brucker (2013)
Endopeadia
The Endo Patients Survival Guide
Adenomyosis Advice Association
Adenomyosis Fighters

So that’s my adenomyosis story. It isn’t pretty, and I’m not sure if a happy ending is on the horizon. Maybe a hysterectomy will be a part of my future, but maybe it won’t. Until then, I plan to keep fighting and making the decisions that are best for my body and mental wellbeing. I would love to hear about your experiences and thoughts on this disease. What symptoms do you have? What treatments have you tried? And, what have you accomplished in spite of this disease?

Love,
Claire
xx

My experience of living with diaphragmatic endometriosis.

Ah, the diaphragm-  a sheet of skeletal muscle only a quarter of an inch thick and located beneath the lungs. It plays a crucial role in facilitating the lungs to inhale and exhale (aka breathing), and in separating the thoracic cavity (containing the heart and lungs) from the abdominal cavity (containing your stomach, liver etc).

diaphragm diagram

Who knew such a tiny organ could produce such armageddon like pain!

The diaphragm is a greatly under appreciated organ in my experience- like most people I’d never given mine a second thought until it was attacked by endometriosis and became extremely pissed off. From that point my diaphragm started to control my life, and let to much confusion, misdiagnoses, and experimenting with alternative therapies before we worked out what was wrong!

I was officially diagnosed with diaphragmatic endometriosis (sometimes interchangeably known as ‘thoracic endometriosis’) during my first laparoscopy in 2014. Since my entire endometriosis diagnosis came as a bit of a shock, this particular piece of information didn’t stand out as particularly alarming.  At that moment I did not know (nor was I informed- thanks doc) that endometriosis in this region is extremely rare , strongly associated with severe pelvic disease, and in extreme cases may cause catamenial pneumothorax- where a lung collapses around the time of menstruation! I definitely think I’d have requested follow up sooner if I’d know this!

Conducting my own research on this topic post-surgery was a real eye opener, a massive EUREKA! moment in fact. Did you know, for example, that the shoulder/back/neck pain caused by diaphramatic endo is actually referred pain caused by irritation of the phrenic nerve? Or that the majority of cases affect the right side of the diaphram rather than the left, due to a process called embryonic patterning? Finding accurate and detailed information was not easy though, even my beloved ‘Endometriosis For Dummies’ book revealed zilch. The reading I did manage to do somewhat perpetuated my feeling of loneliness at first, as I did not meet anyone else in my support group or online for quite some time who also suffered in this way. And for me, my diaphragmatic symptoms made up a significant amount of my pain.

What was fascinating though was how many women have approached me interested in this topic, and with lots of their questions and concerns relating to it. Many suggested they could not find many personal accounts online or research to compare their own symptoms too, and suggested that many doctors had been dismissive of their concerns because the condition is rare. Because of this, I’ve decided to write this post to address the most frequent questions that I am asked, and to tell my own story in greater detail. I hope you find this helpful! 🙂

How was your diaphragmatic endometriosis diagnosed, and what exactly was found?

As mentioned above, I was diagnosed during a laparoscopic surgery in 2014. This surgery was performed by a general gynecologist not an endometriosis specialist. Two nodules, a small amount of scarring, and an endometrioma (Yes! You read that right! An endometrioma!) were found on the right side of my diaphragm. I had previously had a number of ultrasound and MRI scans on my chest area which had (very frustratingly) come back clear.

Some of the endometriosis nodules found on my diaphragm.

Some of the endometriosis nodules found on my diaphragm.

What symptoms do you experience as a result of your diaphragmatic endometriosis?

I initially began to experience right shoulder tip pain in 2012. This was a sharp sensation comparable to the oh so miserable gas pains experienced after a laparoscopy. This pain made moving my right arm very difficult.

Over time the pain spread into my back, neck, and arm, and became a daily feature of my life. I have marked the precise locations on the diagram below. Much of this pain felt muscular to me, like a deep burning pain after working out too hard. I actually began to have frequent massages (FYI- they didn’t help my pain, just to empty my bank account) as I was convinced I had just pulled a muscle in my shoulder at the gym.

Where I experience pain from my diaphragmatic endometriosis.

Where I experience pain from my diaphragmatic endometriosis.

You know when you have a bad bruise on your skin and you press it with your finger- the whole right hand side of my back felt like this to the touch. My GP (mis)diagnosed me with Repetitive Strain Injury (RSI) and gave me some medication for this (which again, didn’t help). When my symptoms flared up, breathing would sometimes become very difficult and something I would have to concentrate on. I also found it impossible to sleep lying down and had to prop myself up with a number of pillows or sleep on the sofa sitting up.

I cannot over-empahise how agonising diaphragmatic endometriosis has been for me. It has definitely been the worst pain I have EVER experienced. During the summer of 2013 it flared up so badly that I had to spend 3 weeks in bed as I was literally unable to move my arm, back or neck without almost passing out from pain. It was a really frightening time. As an interesting anecdotal side note, the other women I have met with this have said the same thing about how extreme the pain is, so I don’t think this is one of those cases of me being weird!

What impact has endometriosis on the diaphragm had on your quality of life?

To be completely honest, a massive and catastrophic impact. Having your right arm incapacitated on regular but random intervals made having a ‘normal’ life very challenging . Severe flare ups would often last for several weeks at a time and meant that I couldn’t drive to the office, work on my PhD on my computer, cook for myself, exercise, or socialise etc.  It was around this time I started to become isolated and depression took a strong hold of me, one that still has not let go.

What treatments have you used, and how effective were they?

I found that my diaphragmatic symptoms, as with my other general endometriosis symptoms, respond well to anti-inflammatory medication and to heat.  Not well enough to use drive or exercise, but enough to stop me from passing out at least.  It’s the small victories we must celebrate in such hard times. Taking the combined contraceptive pill over the last year prevented any major flare ups and been a total lifesaver in many respects, but I would still get mild shoulder and back pain on some occasions.

Fairly sure this is my future, much heat pad abuse is going on daily.

Fairly sure this is my future, much heat pad abuse is going on.

In my most recent surgery I had the endometriosis excised from my diaphragm! It was pretty exciting for me, as I wasn’t sure if they were going to be able to remove it, as they had warned me this may have to happen in a separate surgery at a later date. I’m hoping this is going to solve my problems in this area, but will have to report back in a couple of months time. So far so good though, no symptoms to report 🙂

My doctor/consultant/surgeon won’t take my concerns about this seriously, what should I do?

I’d print out and take this paper with you, and insist on them taking your concerns seriously. Or ask for a referral to an endometriosis specialist– I’d like to hope they’d at least entertain the idea that endo can hijack the diaphragm  (please feel free to correct me if I’m wrong). It is possible for surgeons to check your diaphragm during a laparoscopy if you do have concerns. You may have to ask though as not all doctors routinely check this area.

Do you have any further information about diaphragmatic endometriosis that you have found useful?

I found these two endopaedia articles (see here and here) to be an informative and accessible starting point.

So that is my story so far with diaphragmatic endometriosis. I’m frustrated that this problem, yet again, took years to sort out and involved misdiagnosis, but I am happy that I have now had the surgery that will (hopefully) solve the problem. Meeting other people with the condition, and speaking to other women about their concerns, has been so helpful in my recovery process and has taught me so much more than reading. Most of all, I have certainly come to love my diaphragm and appreciate what it does for me 🙂

Please do let me know your thoughts or if you have any other specific questions. Always interested to hear from anyone else who suffers with diaphragmatic and/or thoracic endometriosis too, do my symptoms match your own?

Love,
Claire
xx

What’s it like to have a laparoscopy for endometriosis?

During the six weeks or so that I was waiting for my laparoscopy to remove my ovarian cyst and confirm my suspected endometriosis I was literally terrified every day. I had never had any surgery before, and even trips to the dentist make me feel anxious. A lot of crying was done.

Having asked around my family and friends it quickly became clear that nobody I know has ever had a laparoscopy or knows what one is. As pleased as I am about that, I knew that I was very much on my own with this. So, as all twenty-somethings naturally do in my situation, I turned to Google, even though I know this is often a TERRIBLE idea for health related matters. I have had internet search related health meltdowns more times than I care to admit. I once thought I had SARS. Seriously.

So anyway, after lots of searching about what a laparoscopy would be like, I came away disappointed that I was still little better informed than when I started. There doesn’t seem to me to be much written about the procedure in it’s own right, it is usually a minor footnote in people’s wider experiences of gaining an endometriosis diagnosis. I read a lot of forum posts, and these were often horrifying worst case scenarios- or at least, that’s what I had to tell myself that or I’d never have gone through with the surgery. An additional problem was that most of the sites I came across were American, which were helpful to a point, but I know that processes and things can be quite different in the NHS.

I decided that once I was through the laparoscopy, I would write a post about what it was like, to help women in the UK better understand what to expect- before, during, and afterwards. I know that everyone’s experience is unique but I think it is probably helpful for more of us to lay this on the table to demystify the process and help remove the fear. Remember- Knowledge really is power! 😀 I have written this post in Q&A form to address the questions that I felt were important leading up to my laparoscopy, and also what friends and family wanted to know.

Q: How were you prepared for surgery when you arrived at the hospital?

A: When I arrived to hospital (at 7am- that seemed insanely early at the time!) I was quickly seen by a nurse who took my blood pressure, and weight etc. She was very friendly, and I felt able to confide some of my worries to her. She did her best to reassure me, and went to get the anesthetist. He and I had a long chat about what would happen during the surgery- and I think knowing this in detail helped to relax me a lot. After this, I had a short meeting with my surgeon/consultant, where I had the opportunity to ask any final questions. Then I was whisked away, changed into my very flattering and beautiful surgical gear, and was walked over the the operating theater. I remember chatting to a few of the surgical team about the ska band ‘The Specials’ and then shortly afterwards I was asleep! It all went by so quickly, and actually, after weeks of worry I felt very calm on the day as everyone was so supportive and reassuring.

Q: What were your biggest worries about the procedure?

A: These types of worries are very personal. For me, it was mainly the possibility of the anesthetic not working, pain after my surgery, and the risk of having to have a bigger cut made (a laparotomy) if something went wrong. I discussed these worries with my nurse and anesthetist, and I am so glad that I did, even though I felt really daft, because they were excellent at tackling each of my worries and explaining what they would do to manage each of them. My anesthetist actually gave me a really impressive talk on ‘awareness’ during surgery, and why it wouldn’t happen to me, that was very moving both visually and emotionally- I assume he wanted to be an actor but his parents had pressured him to going to medical school.

Q: What was having a general anesthetic like?

A: Quite a surreal experience, but not a horrible one at all. I’d already been given a sedative at this point- presumably because I was ‘quite anxious’- so it was actually quite difficult to stay awake anyway. From my general experiences in hospitals over the past few years, I always recommend taking the sedation if it’s on offer- it is your friend. The anesthetist told me he was putting the anesthetic into the drip he had placed into my hand, and so to open my eyes, and that was the last thing I remember. It wasn’t a general drift to sleep- I was out like a light. After the surgery, I don’t think I had any bad side effects from the anesthetic- such a nausea. However, I was quite drowsy for a couple of days.

Q: How long did the procedure take?

A: From walking over to the operating theater to waking up in the recovery area took three hours.  For me, it felt like three minutes really, but my parents said it felt like three days as they waited in the hospital coffee shop. Time is relative in these matters I think. My surgical team had initially thought my operation would take half that time, but they hadn’t expected to find such widespread endometriosis inside me, and spend a long time documenting and photographing it on my various organs.

Q: How did you feel when you woke up?

A: Very calm. When I first woke up, I felt like I was gently waking up from a good nights sleep. I felt positively sprightly! After a couple of seconds I remembered where I was, and looked around to see a nurse sitting beside me. We had quite a nice chat for 10 minutes, and she assured me that my operation had gone well and that they hadn’t needed to remove my right ovary. She also gave me some oxygen through a tube which went up my nose. Over the 10 minutes, I began to become aware of some pain in my abdomen. If I had to describe it, I would say it was a combination of a muscular ache (similar to the feeling after you’ve done too many sit-ups), and a sharper more stabbing pain where the incisions had been made. I was offered morphine, but said I was happy to try paracetamol and ibuprofen and see how things go. I actually managed fine with that level of pain relief throughout my entire recovery.

Q: What happened during your hospital recovery period?

A: Not much really, once I was wheeled over to the recovery ward. I was mainly just left to rest and chat to my mum and dad. I was on a slight euphoric high I think because I was so pleased that I had got through the surgery OK. I was given some tea and toast, which I really didn’t fancy, but when I started with them they were the best thing ever. Honestly, I think it was miracle toast, because after I had finished it I felt so much better and in less pain. Hurray for toast and the nurses who make it for us! I also needed to go to the loo quite a few times, which I found slightly odd since I was so dehydrated. Mum mum helped me hobble to the bathroom- but it wasn’t really painful, just slightly uncomfortable. They make you check there is no blood in it, as this can indicate problems from the surgery, but mine was all fine.

Q: How were you given your results?

A: After being awake for about an hour, my consultant/ surgeon came to talk to me and my mum. I thought she did a good job of explaining the findings of my surgery in a simple way that I could understand. She also showed me some photographs of my insides which was actually quite cool, although really surreal. I thought my mum was going to faint though when she saw the photos- she is very squeamish.

Q: When were you able to go home?

A: I went home at 3pm, with the help of my parents, around 3 hours after waking up. I was actually quite lively and was able to move around fine. I had dreaded the car journey back home, but that was actually fine too! Just be very wary of where you are placing your seat belt, and maybe take a cushion to help with this.

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

Q: How was your post-op recovery?

A: Much easier than I’d anticipated. I’d say I was quite sore for about four days, and after that felt OK, just tireder than usual. I used it as a good excuse to be waited on by my partner and parents! 🙂 I was back to my hardcore boot-camp exercise classes 3 weeks later- which shows how quick your recovery can be.  Emotionally, recovery has been a little bit harder. I was initially ecstatic that I had (finally) received a diagnosis that could explain my symptoms, but after about a week the full implications of having endometriosis began to sink in. I’d definitely recommend talking to friends/ family as much as possible during this time. I bottled it up- and I think it set back my recovery in some respects.

Q: Do you have any tips on aiding recovery?

A:There are a few things I wish I’d know about recovering from a laparoscopy, and here they are:

(1) When you meet with your surgeon after your surgery, have somebody write down what was found- because it is quite hard to remember the details in the coming days/ weeks once the anesthetic has worn off. This information will be useful in working out your aftercare and for visits to your GP.

(2) Rest, rest, rest. Websites, and probably your doctor, seem to make out like you will bounce back from a laparoscopy after a few days. In reality, I found it was about 5 weeks until I was completely back to normal.

(3) Involve friends and family as much as you can, by keeping them updated and letting them keep you company. Trust me, you don’t want to go through this alone.

Q: What are your scars like?

A: Not too bad- they are actually surprisingly tiny. Three months on, my navel looks pretty much back to normal!  They were itchy for a couple of days the week of my surgery, but have been no bother since.

Q: How has your follow up care been?

A: I have been discharged to the care of my GP, who is a lovely and understanding lady. Although I was recommended the Mirena coil, I have decided not to go ahead with this the moment as I weigh up its advantages and disadvantages, and my GP has been quite good at helping me working out what might be a viable alternative. I am giving the pill a try at the moment, and seeing how things go.

So, that was my experience of having a laparoscopy to diagnose endometriosis and remove and ovarian cyst. I do hope this helps, even if it makes things just a bit less scary.  If you have any comments or questions I’d be more than happy to answer them. I could also add them into this blog post if it would be helpful.

Love,
Claire
xxx

Endometriosis: My diagnosis story.

One vivid memory from my childhood, I must have been 9 years old, was nervously asking my mum: ”Do periods hurt?” My mum was always brilliant at handling all questions birds and bees, and she gave me a characteristically diplomatic answer along the lines that most people find it OK, and manage with a hot-water bottle or some paracetamol if needed. I was comforted, but secretly felt that I would be one of the unlucky few at the severe end of the spectrum- I am a natural pessimist. ”But what will that feel like?” I wondered.

Fast forward 15 years and it’s definitely been a case of worst case scenario confirmed.When I have a period I stay awake for days, in agony, lying in the fetal position or pacing my living room. Painkillers do nothing. A hot water bottle helps a bit, enough to stop me from passing out at least. On the plus side, all the nights awake have given me a lot of extra time to watch documentaries and read things, so my general knowledge is pretty good now.  I was on the pill for seven years (I had emphatically insisted to my GP that I would fail my GCSEs if I didn’t have it) and found that had helped to mask my symptoms and make life bearable again.  However, I experiencing a bout of chronic and debilitating  migraines in 2010, my doctor suggested I stopped taking it. No substitute or alternative medications were discussed, I was just left to get on with things. When I raised the problem again and again I was always given a prescription for Mefenamic Acid and sent on my way, despite my protestations that the drug has little effect on me.

So, I was back to square one. To make things worse I had started to experience some additional symptoms over the past year- severe stomach upsets, exhaustion that would not go away no matter how much I slept, headaches, and pains in my abdomen, chest, and shoulders. Fed up and very anxious, I went to see my new GP (I had moved house), who referred me for some blood tests. They revealed an elevated ESR score- which is an unspecific marker for inflammation somewhere in the body. I had a number of scans, but they all came back clear, so I was sent on my way again.

A year passed by where I just struggled on with no help, and struggling to make sense of what was happening to me.  It got the the point where I really wasn’t functioning on a daily basis, so I went to see my GP again. This time I insisted on being referred to a specialist- and was promptly sent on my way to gastroenterology. Over the next 12 months I had an array of tests (blood cultures, CT, ultrasounds, colonoscopy, endoscopy etc) and many potential diagnoses were banded around (Chron’s disease, IBS, coeliac, CFS, pancreatitis to name a few), but it mainly seemed to be lots of stabbing in the dark and little concrete progress. On one occasion shortly after this, my stomach upsets became so bad that I was unable to eat or drink for five days, and was hospitalised over a bank holiday weekend attached to a potassium drip. Again, I had an array of slightly odd test results (elevated ESR, blood in my urine etc), but since it was a bank holiday nobody was really about to look into things, so I was sent on my way again.

As a last ditch attempt to investigate the elevated inflammation markers in my blood work, my gastroenterologist agreed to me having an MRI scan of my small bowel- as Chron’s disease runs in my family. The test was slightly more dramatic than I planned (as is my general style) as I had to drink a litre of what I can only describe as ‘death juice’ before the scan could go ahead- and I struggled (read: mainly failed) to keep it down. Slightly hilariously, as I was projectile vomiting it across the room for the 10th time, a nurse commented: ”Do you just not like drinking it? Is that the problem?”Anyway, once that particular ordeal was over with, I didn’t hear anything for about two months, so I presumed that, as usual, the test had come back clear- no news is usually good news in these circumstances I find.

Out of the blue one Tuesday morning I received a letter from my consultant, saying that my intestines look OK, but I have a 5cm by 5cm ovarian cyst, and as a result she is referring me to gynecology. On a side note, I found this news very disturbing to receive by post. It naturally prompted ALOT of questions to come up, but I had nobody to direct them too. Dr Google wasn’t much help either as there are so many types of ovarian cyst, that I couldn’t guess which type I may have.

After waiting a few weeks I had an ultrasound scan to see if this cyst was still there, as many just reabsorb on their own accord. Sadly, it was still there, and the ultrasound lady kept giving me her ‘pity’ face. This can’t be good I thought- which was confirmed the next day when my GP called and asked to see me. She explained that my cyst was the solid, sinister kind and that as a result she was giving me an emergency referral to an oncologist for three days time. I cannot describe how stressful those three days were. Time almost stood still, but my heart was beating at what felt like a thousand beats a minute for the entire time. When I was sat in the waiting room on the morning of my appointment I just kept thinking: How has this happened? How have I ended up here? It was not a good time for me. After looking through my notes he quickly put my mind at rest, as he suggested that I have endometriosis, and was sending me for a laparoscopy and cystectomy to confirm this.

I found the six week wait for the surgery quite difficult. I’d never had an operation before, and worried about what it would be like. The big day rolled around quickly however, and by 1pm I was awake and in recovery. The procedure and immediate aftermath were nowhere near as bad as I feared, but I am planning to talk more about that in a later blog post. By 2pm my surgeon came to talk to me.  She told me that I have severe and widespread endometriosis that is attached and scarring my uterus, ovaries, stomach, diaphragm, bladder and bowel. She said the surgical team were amazed at how bad it is inside me ”considering I have been so asymptomatic” (I’m going to need years of therapy to fully get over that comment I think). After this, I was then informed that my main problem over the coming years is likely to be fertility, and that I should have the Mirena coil fitted to help preserve this and to manage my symptoms. And with that, I was swiftly discharged from hospital to the care of my GP.

On reflection, I am pretty angry that it took so long for me receive a diagnosis, and some proper medical input. I think that if I had been listened to properly over the years, and my symptoms considered in unison rather than isolation, it needn’t have got to this point.

So, that’s my endometriosis diagnosis story. Sorry its so long! Although, considering it takes over 7.5 years (on average) to receive a diagnosis in the UK, its perhaps not too surprising that this is a complicated tale. How does it chime with your own experiences, or those of somebody you know? I’d be really interesting to hear your thoughts!…

Love,
Claire
xxx