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

I FINALLY had my hospital appointment. It didn’t go to plan.

As I have mentioned in previous posts, I have been waiting for quite a few months for my appointment at an endometriosis specialist center in London.  I’ve been pinning so much hope onto this appointment, and it’s the only thing been pulling me through the last few months, thinking I would finally get some help and support.  My family were even more excited for the appointment than me, as they are just desperate for me to start getting better or for some progress to be made in my care and treatment. The appointment was this Monday, but of course, this is ‘The Endo Lady Show’ and so it didn’t go to plan. WHY DO NONE OF MY PLANS GO TO PLAN? Let me tell you what happened…it’s quite a long and complicated story so please do stick with me.

Even arranging the appointment itself was no mean feat, as my GP wasn’t keen on the idea. She didn’t think it was necessary as she said ”endometriosis isn’t a big deal.” Anyway, she did eventually agree to the referral (after much begging), and I received an appointment through the post quite a few weeks later, on Christmas eve. Unfortunately, it was clearly for the wrong department (diagnostic gynecology), so I cancelled it and called my GP’s booking department to point out the error. I gave them the exact details they needed to make my appointment through NHS choose and book, and a couple of weeks later I received a letter from my GP practice saying the appointment had been made and listing the time, date, and clinic number. This whole process took around 4 months, which is quite a long time I think. Still, I was booked in, and apart from another long wait of 15 weeks all was well I thought.

My partner and I arrived at UCLH with plenty of time to spare and made our way to the clinic number I’d been given. I signed in and was asked to complete a short medical questionnaire, which I did no problem. Two hours later we were still sat in the waiting room and I hadn’t been seen. I thought this was pretty weird so I went to check up on what was happening with the receptionist. Turns out they’d forgotten me- can you believe that?! So that wasn’t a good start. I get really anxious in hospital waiting rooms so I was feeling really agitated and exhausted by this point. The administrative staff were totally panic stricken about it though in a slightly hilarious way, and one receptionist actually chased a consultant down the corridor to tell them I was still here.

Around 30 minutes later a registrar came to collect me and led me down the hallway to her office. The first thing she told me was that this was not the specialist center and that I had been referred to the wrong place. She said they had realised as soon as they received my referral that it was for the wrong department. Time stood completely still for a moment and I felt sick to my stomach, but somehow I managed to hold my shit together, smile, and continue with the appointment without going elaborately insane. She told me she would happily refer me to the right place and that this would require an in-depth health interview and a trans-vaginal ultrasound which we could do there-and-then. I had written down a list of all my symptoms to take with me, and I made sure she noted them all down in my questionnaire responses.

I’d never had a trans-vaginal ultrasound before, and I can’t say it was a pleasant experience. I actually threw up when she was pushing on my ovaries because the pain was so bad. So that was pretty awkward. On a positive note, the doctor was able to map the current state of my endometriosis pretty clearly, so I am now much more up-to-date on where things currently stand. Sadly she said that the endometrioma on my right ovary that I had removed in August is growing again with a vengeance, and that I now also have a cyst on my left fallopian tube. Since my surgery my right ovary has also become attached to the back of my uterus and abdomen wall, explaining the increase in my pain on the right hand side. And for the cherry on top, she also said that I have adenomyosis. Lucky me! I’m not sure about the extent of this though as she didn’t go into detail.

When I was being told these things I just went totally numb inside. That seems to be my go-to response in a crisis. The registrar then left me for around 20 minutes while she went to arrange my appointment at the specialist center. When she came back she looked really sheepish, and said that the next available appointment she could make for me is in May- three months away. I hate that I did this, but I actually broke down in tears at this point. Months and months of anxiety and anticipation just caught up with me. I told her I just don’t know how I can wait that long, since I have been trying to get this referral since August. I told her about how badly the pain and fatigue is affecting my PhD and my mental wellbeing. She was super apologetic and I could see she felt bad for me. She said she can see from my notes and scan how desperately I need to be seen by the center, and she has made sure I am at the top of the waiting list for cancelled appointments.

So that’s where I am again now. Still waiting- for answers to all my questions, for help, for advice. Still in limbo. Still worrying myself half to death about all my cysts and endometriomas. By the time I have my appointment at the specialist center, I will have been waiting to see a specialist for 10 months-that can’t be OK can it?! There are loads of people in my support group who were diagnosed after I was, but who are light years ahead in their treatment in comparison to me. I’m happy for them, I’m not bitter or begrudging, but I just want the same for myself.

I’ve had several severe panic attacks since my appointment and I haven’t gone back to work yet. I’m a bit of a mess to be honest. I usually do a fairly convincing job of staying strong and positive, but I’m feeling so broken and lost right now. I just want to give up. Since being diagnosed in August I’ve had to battle so hard to make any progress at all in my care, and I’ve still basically gotten nowhere. I actually want to make some complaints I think because I’m so angry; about my GPs attitude to my care, to my first hospital (Addenbrooke’s) for giving me no followup or treatment-plan, an to UCLH for seeing my referral was to the wrong department but for accepting it anyway and delaying my correct referral by several months (I can just about forgive them forgetting my existance as I sat in their waiting room!).

I’d really appreciate hearing your thoughts and feedback about this. Am I right to feel upset, or am I just being melodramatic? I really don’t know anymore. Do you have any advice on making constructive complaints? Also, if you have any thoughts or tips about adenomyosis please do let me know them.

Love,
Claire
xxx