My fertility is Schrodinger’s cat.

November 23, 2015 / Endo Lady UK / 11 Comments

While sitting in the hospital waiting room the other day waiting for my name to be called- it was my post excision surgery checkup, I could feel my heart starting to beat really hard and fast, my palms became sweaty, and my eyes starting to well up with tears. In my hand was a list of questions I hoped to ask in my appointment, most of which concerned fertility. It’s well established that endometriosis is linked to a lower rate of fertility, with increasing severity of the disease further decreasing likelihood of conception. I’m a stage four gal- never wanting to do things by halves, and this has been worrying me since my diagnosis in August 2014. Between you and me, Mr B and I are just starting to try for a baby, so the fertility issue has been on my mind a lot lately.

Sitting in that over lit waiting room I had a sudden epiphany- my fertility is Schrodinger’s cat! For those not as nerdy as myself, ‘Schrodinger’s cat’ is a thought experiment from Physics, which postulates that it is ‘observation’ (i.e ‘looking’) that makes things real . This short video explains the basic premise very well:

In this scenario the cat is my fertility and the poisonous gas is the toxic combination of my endometriosis and adenomyosis. Good right? My brain fog had clearly recovered enough to formulate a high level metaphor- progress right there!

As I’ve never tried to have a baby before, my fertility is simultaneously dead AND alive- and we won’t find out which until we try. There are no definite answers to be given right now.

The uncertainty of this situation scares me. It follows me around daily like a big black cloud hanging over my head that nobody else can see. I want to beg my doctor for concrete answers about my situation. Perhaps a definite ”you can’t” would be easier to handle than constant ”maybe you cans”? Although to have hope means something. You never imagine that you will have to question your fertility, it’s just there until you need it right?! I’m in my 20s, this can’t be happening! The pain of this certainty being taken away is just indescribable.

Worrying about your fertility can be a very lonely experience, especially when you have loads of friends who are all pregnant or new mothers. I’m so happy for them, I’m just sad for me. Maybe unnecessarily sad, but still sad. But I was never the girl who daydreamed about having kids; dressing up dolls and picking out potential baby names. It was meeting Mr B that changed all that. Crafting out our future together I can totally see children in it. I want that. I’m ready! I think I’d be a good mother. He would be the most AMAZING father.

In my appointment, which ended up being with an specialist endometriosis nurse (which was excellent by the way- she gave me an hour of her time and answered all of my questions with a high degree of knowledge and empathy), I tried my best to explain all my fears:
1) How I constantly swing between positive thoughts (‘‘Your Fallopian tubes are clear” and ‘‘You’ve had excision surgery now, that will help”) to negative ones (”Your right ovary is a wreck”, ”You have to much inflammation” and ”You have adenomyosis”) a thousand times a day in some weird fertility related bi-polar.
2) How I’m so scared to come off hormones as being on them has kept me going for most of my life, and because I’m scared that my endometriosis and adenomyosis will go wild without them.
3) And how I’m so scared to face an infertility journey, if that what comes, and am not ready for it. I have become familiar with what it does to people and I feel so guilty for the possibility of my husband never being a father or my mum and dad grandparents.

We can call this ‘Plan B’.

”You’re a worrier aren’t you?!” my specialist nurse commented. That’s true, but I’d call myself a realist. How can I not be, when I’ve done my reading and met so many people affected by this problem? It’s another example, so familiar to us those living with chronic illnesses, that people ‘don’t get it until they get it.’ They never will.

Right now I can’t answer all of these fears. Nobody can. All I can do is try and see what happens. It’s time to open the box and reveal the kitty’s fate. But I’m so scared to look inside, I don’t know if I can handle what’s in there.

I’d love to hear your thoughts and experiences of fertility with endometriosis and/or adenomyosis. Did you fear the worst but get lucky? Or do you stay positive that things will work out? Are you aware of actions to take which may help?

Love,

Claire

Recovering from a laparoscopy for endometriosis.

September 11, 2015 / Endo Lady UK / 9 Comments

Two weeks ago today I had my laparoscopy at UCLH. The surgery lasted for three hours, during which endometriosis was removed from my ovaries, diaphragm, bowel, pouch of douglas, and peritoneum. In addition, my uterosacral ligaments were removed and my ovaries were unstuck from my uterus and peritoneum, and a large number of adhesions were. Overall this is a positive result, and no unexpected complications occurred for which I was at high risk- such as needing a colostomy bag and/or a second surgery to address my more complex areas of endometriosis. In all honesty the most difficult aspect of my admission was being last on the surgical list and having to wait around all day starving and dehydrating my butt off.

My bowel prep the day before was a whole other story though. I wasn’t that stressed about it beforehand, having undertaken one before when I had a colonoscopy. However, my body does love to troll me, so I spent the entire day before my surgery unexpectedly ‘firing from both ends’ (TMI I know- sorry) in my London hotel bathroom while my parents and husband awkwardly pretended not too hear in the bedroom next door. I don’t know what that was about as I was fine the last time I took one. The hilarious/ironic/awful thing was that the bowel prep didn’t even manage to complete itself as I was still going to the loo constantly throughout the next morning, so I ended up having to have an enema too. Life is so cruel!

Since having my surgery I have been approached by a number of people on endometriosis forums asking me to comment on the quality of care I received at UCLH, which is registered as a BGSE specialist centre, but seems to have a somewhat mixed reputation within the endo community. I have decided to write a more detailed post about this at a later point, once I have had my post surgery follow up with my surgeon, so do keep a lookout for that. For now I will say that overall I was pleased with my care throughout my admission and was impressed by how knowledgeable and compassionate my surgical team and nurses were.

I was well enough to do yet another TERRIBLE post-op selfie. Somebody needs to remove my phone when I’m under the influence of morphine.

I’m now recovering at home with the support of my husband and parents. Recovery is a tricky business isn’t it? Nobody ever prepares you for that. It is a given that you are going to be anxious when preparing for surgery, and people respond to this with understandable sympathy, but afterwards it seems like everyone expects you to be ‘fixed’, happy, and to just get on with life again.

I have been feeling slightly on edge because I am so desperate for this surgery to have worked to have some quality of life again. It’s weird because I think with most operations you know very quickly afterwards whether it has been a ‘success’ or not, whereas with endometriosis being a cyclical in nature it’s much more of a waiting game to find out whether the surgery has reduced or eliminated your symptoms. I don’t like waiting games, I am fed up with them now. Mr B and I also want to try for a baby soon, so I am beginning to secretly stress about that too. I’m really scared about whether I will be able to. I’ve never walked down infertility road but it looks a scary place to be from what I’ve read and the people I have talked to who have been there.

Being off work gives you a lot more time to think about these things. Too much time perhaps.I’ve been feeling quite flat, like I don’t know what to do with myself now. It’s like a big anti-climax as you spent so much time and energy focusing on and preparing for the surgery and then suddenly it’s all over.

On this plus side, I think I’ve been recovering really well. My scars are teeny tiny and healing well, I’m in little to no pain, and my family and friends have rallied around me this time so I am feeling really supported. I’ve never been good at relaxing and putting myself first, so that’s what I am going to work on over the coming weeks I think. I am also going to take up yoga when I’m well enough again to get this body as healthy and strong as it can be. Things ARE going to be better from now on I can feel it…they have to be.

I’m happy to answer any specific questions about surgery, bowel prep, or UCLH if you have any, or to hear about your ideas and tips for post-surgical coping and recovery.

Love,

Claire

Choosing surgery: Shooting for success, surrendering to sacrifice.

July 20, 2015August 10, 2016 / Endo Lady UK / 2 Comments

I am now booked in to have my excision surgery at the end of August at UCLH. The plan is to remove as much as my endometriosis as possible (from my bowel, diaphragm, peritoneum, pouch of douglas, and ovaries), drain my endometrioma, and unstick my uterus and ovary from my abdomen wall. Regular readers of this blog will know that this surgery has been very hard fought for, so I really hope that it is a success and that it enhances my quality of life.

Somewhere between my pre-op appointments and signing doom-filled consent forms, I started to think about just how much pain, sacrifice and trauma we women with endometriosis have to go through for the mere possibility of feeling any better. It seems so unfair and is little understood by those around us. I mean, until we became chronically ill we were used to the following equations when it comes to illness right?:

illness + medication= cured

illness+time= cured

illness+surgery=cured

But this is so different when you have endometriosis, because there is no cure and no appealing treatment options. And, at times I feared, no happily ever after. But I REALLY want happily ever after, so following much thought I decided that I am willing to take risks and fight for that ending. But making these decisions (i.e. to have surgery or a new hormone treatment) it isn’t easy and the path is riddled with more danger, pain, and uncertainty than I feel is really fair to ask of us.

My experience with a chronic illness.

For me, having major surgery means accepting the following things, which seem really overwhelming and scary:

In order to get better, I have to accept that things will be much worse first.

I’ve had one laparoscopy before, but that was a minor procedure whereas this surgery is classified as a major one because of the amount of work being done internally. As a result I face a greater amount of pain and a longer recovery period, before I can start reaping any benefits to my life. I’m also not great at sitting about and resting, so I imagine I will spend my sick leave worrying myself half to death. So that’ll be fun. After my surgery I’m going to have a Zoladex injection too which I’ve heard mixed reviews about.

I am going to have to take a four month break from my PhD. I will not be paid during this time.

While work have generally been supportive, I do think that having yet another break from my PhD does me no favors career wise. This is so frustrating when I have always worked so hard and have big aspirations. I have also been financially independent my whole adult life, so suddenly having to choose between having surgery and having money has been such a difficult decision to make. This decision was make harder by the fact that…

I will be physically, emotionally, and financially reliant on my husband and parents during my recovery.

Guilt doesn’t even begin to describe how this makes me feel. I can (just about) cope with endometriosis negatively impacting upon my life, but I have always tried to shelter the people I love from its grasp. I hate the idea of having to rely on my husband for money, to ask when I need things. And I hate that he and my parents will be having to go without because of me.

Hopefully this will not be the case.

I have limited control over the outcomes of my surgery.

I am going into this surgery for of hope that it will help improve my life, but I know that this is not guaranteed. With any surgery there are risks and potential complications. My former surgeon actually advised me against having any further endometriosis surgeries because of these, she said: ”The risks aren’t worth it for a disease which isn’t life threatening.’‘ She clearly has never had to live with a chronic illness. In my case the amount of bowel work that will be done means that I may end up with a temporary colostomy bag :S I don’t look forward to this and am hoping and praying that it won’t happen, but sadly it is not an outcome I can control.

I have limited ability to plan for my future, both in the short and long term.

While all this is going on, it’s just impossible to make plans. Not that stops people asking: ”When will you be back at work? When will you finish your PhD? When are you getting a job? When do you want to move house? When shall we have a baby?” I just don’t know right now, and I find that hard as I’ve always been a natural planner who is sure of their next step.

I don’t want to face any of these things, but I will do anything to try and feel better. I know my life can be so much more than it is right now, and I know that I can be brave and get through this somehow. It makes me so angry that I and all you other wonderful women have to go through these repeated surgeries and hormone treatments in the hope of some relief. I don’t think healthcare professionals or employers understand the massive impact that these things have on our personal and emotional lives. But all we can do is have hope, and be brave, and keep believing that things can be better for us.

I’d love to hear your thoughts about any sacrifices you’ve made to have treatments for your endometriosis or chronic illness. Or how you get through the difficult times pre/post surgery.

Love.
Claire
xxx

I FINALLY had my specialist endometriosis appointment at UCLH. It did go to plan (well, sort of)!

May 23, 2015August 10, 2016 / Endo Lady UK / 10 Comments

It took ten months of pleading, tears, tantrums, and epic disasters, but on Thursday I FINALLY had my specialist endometriosis appointment at UCLH. I knew I was booked in to see the specialist endometriosis nurse and a consultant, leaving me feeling equally excited that I was going to be making some progress at last and terrified about what treatment plan would be devised for me.

Through the trauma of gaining my diagnosis and fighting for the specialist care I knew that I needed, I never gave up (even when I really really wanted to) because I truly believe I can feel so much better than this. I just want to get my life back, at least as much as I can, and start working towards all the things I’ve been dreaming about: a satisfying and challenging career, buying a home with my partner (lets call him Mr B :-)), having kids etc.

Mr B and I arrived at UCLH in good time, and within 10 minutes I was called in to see the endometriosis specialist nurse. It was actually so lovely to talk through my history with somebody who is empathetic and knowledgeable about the condition, and she explained that with my endometriosis in the state that it is currently that surgery is likely to be the recommended option for me. So far, so good. She then asked if I was to see the consultant today and I replied that I was and showed her my confirmation of appointment. A quick look on her computer however showed that, actually, I had NOT been booked in for an appointment with the consultant.

First *face palm* of the day.

Words literally failed me. I think it’s a marker of how many health system disasters I have had in regards to my endometriosis that I didn’t cry or even get angry. To just be there for ten minutes to discuss my patient history was not what I had in mind- I need a little less conversation and a little more action now. I stood firm and insisted that a doctor met with me today- despite her protestations that I would be unlikely to be seen today as all the consultants were ”over-booked”. These aren’t my errors but I am constantly having to pay the huge physical and emotional price with no apology provided. In the end she agreed to speak with the consultants at the end of the clinic to see if they could squeeze me in, and then I was sent off to the waiting area to sit and stew while they made a decision. Mr B’s face was literally hilarious when I told him about the mistake, he just couldn’t believe what was happening.

After a mildly traumatising hour long wait, the nurse returned and said that a consultant had agreed to see my at 3.30pm. Annoyingly, this left me feeling pathetically grateful- like they had done me a favor, rather than having just sorted out their mistake. This little break gave Mr B and I the chance to head into London for some shopping and to stuff our faces with Japanese food and gelato. So there were some silver linings to the day. 🙂

Upon our return to UCLH I was able to see the consultant after a mere two hour wait. Fortunately, they have a TV in the waiting room to help pass the time. Unfortunately, they were showing Deal Or No Deal. But hey, beggars can’t be choosers right?! The consultant was a fairly friendly chap, and he reviewed my ”confusing” patient history (his words, not mine) and then went through all of my questions with me. I was a bit disappointed if I’m honest that he hadn’t been able to look through my history or consider my case beforehand. He opened with ”your main problem is pelvic pain and pain on intercourse yes?” NO! And then followed with ”and you haven’t been diagnosed with endometriosis through surgery no?” YES-I HAVE!

Second *face palm* of the day.

After some minor corrections and discussion he laid out my options (do nothing, hormones, surgery), and we both agreed that surgery is the way forward to me. So I am now on the (four month) waiting list for a nice bit excision surgery. Progress! Hallelujah! They are going to get what they can and take my endometrioma on my right ovary, but said that while they will attempt to deal with my diaphragm and bowel problems, that this may require a second surgery depending on what they find. He also said that they would be able to give me more detailed and specific fertility advice after the surgery had taken place.

So after a slightly chaotic and underwhelming experience that’s where I am now- waiting again, but this time it is a positive wait for action. I’m so happy that I am on the surgery list-I wanted that resolved before my wedding in two weeks time so I am not just worrying about my lack of progress. It gives me some time to think about and process things, and plan out the next year if my life a bit before the surgery. With my luck they will probably end up doing the wrong surgery and amputating my leg or something! I was also so glad Mr B was with me, I don’t think I could have coped with the mishaps if I was on my own. He is great company in a crisis, he has the calm head that I lack.

Have any of you had excision surgery for your endometriosis? If so, did it help to reduce your symptoms? Your thoughts, experience, and advice on this would be much appreciated.

Love,
Claire
xxx