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 TERRIBLE brain fog is now just brain mist. Time to celebrate!

Following my excision surgery a few months ago I am generally feeling much better. By no means perfect, and I have found that my adenomyosis is much louder now that it isn’t being drowned out by endometriosis pain (but that is a story for another time). 

One of the biggest changes I have noticed post-op is to my energy levels, my endo-fatigue has been dramatically reduced, which I’m so pleased about as it was having such a hugely detrimental impact on my life. A knock-on-effect of this also appears to be that my ‘brain fog’ (you know, that terrible feeling that you brain has been replaced with cotton wool which makes forming any type of coherent thought neigh impossible)  has all but disappeared. It’s more of a ‘brain mist’ now I’d say. Admittedly, being off work and having loads of time to just rest and recuperate has probably helped a lot in this area too.

To celebrate its welcome absence, I have decided to list some of the most stupid and/or hilarious things I had done in the last few years because of brain fog (and in homage to this excellent post on the February Stars blog that really cheered me up when brain fog was greatly upsetting me). Enjoy!

brain fog

01/ Turning off the lights in our bedroom for us to go to sleep, immediately forgetting I’d done this, and shouting: ”Mr B, I think we’ve had a power cut, the light has gone out for NO REASON!” His face was a picture.

02/ My mum sent me to a fabric shop to buy some ribbons for a gift she wanted to wrap. I’ve been to this shop hundreds of times since childhood. I completely forgot how to get there and wondered around our town center completely lost and in a daze for 30 minutes, before having to ask a stranger for directions.

lost

03/ Forgetting the word ‘limitations’ when trying to write the ‘limitations section’ of my PhD, and subsequently having to describe the word ‘Taboo’ style to my colleagues in attempt to identify it.

04/ Unpacking my shopping and putting the milk in our cupboard under the sink and kitchen towels in the fridge.

05/ Attempting to get ready for work in the morning and beginning to cleanse my face with nail varnish remover! It’s a good job I started with my cheek and not my eye or this site could be about my experience of living with blindness.

I was very much like that classic scene in Home Alone where Kevin uses aftershave.

I was very much like that classic scene in Home Alone where Kevin uses aftershave.

06/ Locking myself out of my car, and having to phone my husband and/or colleagues to come and rescue me. Three times in one year! My husband was so annoyed last time as he had a two hour drive to come and pick me up, and had to leave work. Oops!

07/ Five lost debit and credit cards in one year- and having to explain to my bank that I am not doing it deliberately.

08/ Coming across as a slightly mental pathological liar on more than one occasion. This actual conversation I had in a support group is a pretty good example…Me: I use this awesome app several times a day to track my symptoms. Friend: That sounds great, what’s the app called? Me: <Long Pause> I don’t know.

09/ Numerous ‘shower fails’ including forgetting to shampoo my wet hair or forgetting to wash out shampoo and/or conditioner, and having to look rather unkempt for the rest of the day.

10/ The ability to perform basic maths has frequently deluded me. At dinner with a friend and she asks if I want to split the £30 bill- I get my phone out to use the calculator as she looks at me like ‘really?!’.

So there you have it. I’d love to hear some of your more hilarious brain fog moments too- I could always do with a laugh! Also, if you’ve got any tips for helping to manage this horrible symptom please do share it here.

Love,

Claire

30 things about my invisible illness(es): Endometriosis and Adenomyosis.

Today marks the beginning of Invisible Illness Week. To help raise awareness of this excellent cause I have completed their #30things meme with reference to my endometriosis and adenomyosis.

Endo 1 in 10

Image credit: Monash University

1. The illnesses I live with are… endometriosis and adenomyosis. These illnesses can cause chronic pain and fatigue, as well as a wide range of other nasty symptoms such as gastrointestinal upsets, painful urination, headaches, and infertility. You can read more about my chronic illness journey on the Endometriosis UK website here.

2. I was diagnosed with these in… August 2014.

3.  But I had symptoms since… I started my periods in 1998. That’s 14 years seeking a diagnosis. It was really difficult to cope, particularly in the five years leading up to my diagnosis as I started to feel ill on a daily basis.

4. The biggest adjustment I’ve had to make is… planning, planning and more planning before I do any social or work activity. I used to be able to ‘live in the moment’. Now each event or goal must be planned and executed with military precision to ensure that pain and fatigue don’t get in the way.

5. Most people assume… I’m in pain all the time. In reality, while pain is a big and unwelcome part of my life I find that my chronic fatigue, stomach upsets, and the anxiety/depression caused by my illnesses much more difficult to cope with and work around. Thanks to the oral contraceptive pill I currently have many pain free days each week.

6. The hardest part about mornings is… dragging myself of bed when I have awful, debilitating fatigue. It is really demoralising knowing that I have to face an entire day feeling unwell and exhausted. Most people don’t realise the bravery of this simple act of getting out of bed each morning when you have a chronic invisible illness.

7. My favourite medical TV show is… Scrubs (does that count?!). I love how effectively it captures how vulnerable patients feel, and the different ways they try to cope. I also think it’s a great reminder that doctors are only real people with hopes, dreams, fears, and flaws too. We can forget that sometimes.

scrubs

8.  A gadget I couldn’t live without is… my laptop computer. It has enabled me to blog about my invisible illness experiences which has been a lifesaver, and to connect with other chronically ill people- both in my community and on Twitter from all over the world. I don’t know how I would have managed without this.

9. The hardest part about nights is… trying to fall asleep. Painsomnia is a very real thing. I meet 3am way more often than I would like too. A lack of sleep also makes dealing with day to day life even more challenging.

10. Each day I take two pills and vitamins… my oral contraceptive pill and a vitamin D tablet. On a bad day this might rise to 10 pills if I need to take pain medication.

11. Regarding alternative treatments I… have tried acupuncture to help manage my pain, but I have really mixed feeling about it. However, I do strala yoga and circuit training which I love. It helps to clear my mind and strengthen my body. I believe that a strong body is better able to cope with pain and illness.

12. If I had to choose between an invisible illness or a visible one I would choose… an invisible one. As hard as it is to live with at least I can just pretend to be my old self sometimes. I can also reveal my illness to people at my own choosing and pace.

13. Regarding working and my career… it’s all gone a bit titanic. I work as an academic researcher and having severe fatigue, brain fog, chronic pain, and cognitive difficulties has been a huge problem. I am thinking of changing track in my career to better suit my new health priorities and physical capabilities, but I haven’t worked out what I’d like to do yet.

14. People would be surprised to know… I have cried about my illnesses every day since being diagnosed. They have broken my heart. At the moment I am seeing a therapist to try and help with this, but I know the sadness will never completely go away.

15. The hardest thing to accept about my new reality has been… the fact my my illnesses have no cure and are here to stay. I somehow have to find a way to live with these illnesses for the rest of my life and can never go back to my life the way it was before I got sick. Nobody trains or prepares you for this stuff. It’s a super scary minefield, but I am determined to rise to the challenge and live my life the best I can.

chronic illness forever

16. Something that I never thought I could do with my illness that I did was… put myself first by taking four months off work to have and recover from excision surgery. I knew I needed this operation for so long, but kept putting it off as I was worried about the impact this would have on my family and career. However, one month into my recovery I haven’t regretted the decision for a second and am doing as much as I can to ‘heal’ myself physically and mentally so that, hopefully someday soon, I can get my life back on track.

17. The commercials about my illness… are non-existent. I wish they weren’t as there is very low awareness among the general public about endometriosis and adenomyosis, despite up to 1 in 10 women being affected. 

18. Something I really miss doing since being diagnosed is… going on epic adventures- climbing mountains, sky diving, traveling to remote places. I wouldn’t do such risky things now, knowing what I do about the state and unpredictability of my health. I can’t be too far from good healthcare, pain medicationss, and bathrooms at any given time.

19. It was really hard to have to give up… gluten, caffeine, alcohol, and red meat (for the anti inflammatory endo diet) so I stopped trying to. I figure I have enough to deal with without having to live a life of complete culinary deprivation. However, I have drastically reduced my consumption of these foods overall and am more mindful about what I am putting into my body. You can read about my endo-diet experiences here.

20.  A new hobby I have taken up since my diagnosis is… blogging and tweeting. Give me a cheeky follow and say hello. I’d love to hear your invisible illness story too.

21.  If I could have one day of feeling normal again I would… bask in every glorious second, and laugh as much as I could while totally meaning it and not faking the smile.

22. My illness has taught me… that the old adage that ‘you are nothing without your health’ is totally true and tragically under appreciated. Health enables every aspect of your life- fun, friendships, family, work, etc. Unfortunately, health is had to truly appreciate until it is taken away from you.

23. Want to know a secret? One thing that people say that really gets under my skin is… ”just think positive”. If people had any understanding of or empathy about endometriosis and/or adenomyosis they simply would not say this. While trying to stay positive is important for survival and emotional well-being, it is incredibly difficult to when facing a daily battle with chronic pain, fatigue, and infertility. Since these invisible illnesses are incurable, sufferers face years of painful and ineffective treatments which come with a free side of complications and side effects. There is also the threat of my illnesses getting worse and having to face the consequences of this. Faced with these things, it is very difficult to ‘stay positive.’

24. But I love it when people… are interested enough to ask questions about my health difficulties and how they impact on my life. For me, this is the main way that people can show me that they care and want to help me (and our friendship) to move forward positively.

25. My favourite quote that gets me through tough times is… this picture (I know that isn’t a quote, but a picture paints a thousand words right?!). It helps to calm my panic and steady my focus when my hopes for ‘recovery’ (whatever that means with a chronic illness) go slightly off plan.

recovery

26. When someone is diagnosed I’d like to tell them… to reach out to other people with chronic illnesses in their own community (and the ‘#spoonies’ online). Tough times lie ahead so having some support from people who really understand will make a huge difference to your happiness and ability to cope. Also, people further down their chronic illness journey are an invaluable source of information and advice to help ensure you get the best care possible from your healthcare providers.

27. Something that has surprised me about living with an invisible illness is… how it has made me reassess every aspect of my life and cut out all of the crap.  I think over time this will improve both my overall quality of life as well as my health

28. The nicest thing that somebody did for me when I wasn’t feeling well was… approach me and say ”I can see you aren’t OK. What can I do to help?”

29. I’m involved in Invisible Illness Week because… this cause has been overlooked for too long. Any little thing I can do to raise awareness through sharing my experiences I try to do.

30. The fact that you read this just makes me feel…a little bit better understood 🙂 Thanks for reading.

 

I’d love to hear your thoughts on living with an invisible illness. I’m particularly interested to know what’s the biggest life lesson you have learned since becoming ill. Bloggers, why don’t you complete this quiz too to help raise awareness of your condition. Take care of yourselves!

Love,
Claire
xxx

This girl just got married! Thoughts on surviving as an endo-bride.

Two weeks ago, I got married to the love of my life MR B 🙂 It was such an amazing and happy time, and the first time in a year that I forgot that endometriosis even exists. Here are a couple of my favorite pictures from the day that a friend took, we haven’t received the official photographs yet:

2015-06-07 15.53.21

wedding1

I’d been so worried beforehand that my endometriosis was going to rear its ugly head and spoil my day, but fate/luck/god/mother nature was on my side and I had one of the most pain free days I have had in years. I think this success was partly down to my slightly obsessive and militant approach to wedding planning, and while there are no shortage of articles written on how to get the most out of your wedding as a chronically ill bride (see here and here for example), I thought I’d share some of my thoughts on this topic with you all anyway.

So, to be a kickass endo-bride, I would recommend taking the following actions:

Sort out everything as far in advance as possible.

Loads of people thought I was a totally anal bridezilla as I had all our prep finished at least a month before the wedding. I’m talking speech written and memorised, boxes of decorations packed, and first dance rehearsed. While people kept saying to me ‘relax- you don’t need to be doing this yet’, I knew it would enable me to save some serious energy/ spoons up in the couple of weeks before the wedding, and concentrate in getting myself as rested and well as possible. This definitely paid off.

Don’t sweat the little stuff.

During your wedding, the phrase ‘it’ll be babies next’ will be said to you at least twice a minute for the entire day. This would usually annoy the hell out of me, especially from people who know me and are aware of my endometriosis, but on this one-off occasion I recommend mastering the face below, nodding politely while letting it wash over you, and moving on to chat to someone.

thumbs up

Babies. Yeah. Simple.

On a similar note, don’t wast any spoons at all fretting over things that in the grand scheme of things just don’t matter. Things can and will go wrong. One of my bridesmaids hair wouldn’t curl and I was like ‘yeah whatevs man, that’s cool’, whereas pre-endometriosis perfectionist Claire may have had a mini-meltdown.

Plan breaks and have a bridesmaid remind you to take them.

I knew I would be running around like an excitable little chipmunk on my wedding day, and indeed I was. To deal with this, I had a bridesmaid remind me to take a break every couple of hours to help me recharge and prevent an epic crash later in the evening and the next day. She also made sure I was eating and drinking enough to keep my energy up.

Choose your wedding dress wisely.

When shopping for my dress I was aware that it needed to be comfortable as anything that caused discomfort would likely trigger further pain and my fatigue to flare, something that would be forgiving to epic endo-belly should it arrive, and something that could conceal Bridget Jones style pants in the event of unscheduled bleeding. I know, my life is so glamorous. Finding a dress that fits these requirements is no mean feat, but they are out there, so do your research.

And while we are on the topic, for the love of all that is holy do the sit test in your dress before buying it. Mine was super comfy when I was standing up/ running around but turned out to be weirdly uncomfortable when sitting down (which we do a lot of when we have a chronic illness- I’m sure you’ve noticed).

Make a speech and acknowledge your chronic illness experience.

I did this, and it was so awesome and liberating to state publicly acknowledge that I’ve been ill and been having a horrible time, but that I couldn’t have got through it without the help and support of Mr B. Pretty much the whole room (including the men) burst into tears which I wasn’t expecting.

If you’re going on honeymoon, plan it wisely.

We went away on a long haul flight the morning after our wedding. MISTAKE! I was properly fatigued and achy, and that last thing I wanted to do was drive to the airport for an 11 hour flight. If you can have a few days/weeks to recuperate first- do it!

Accept that you can only control so much.

If your endometriosis does decide to rear it’s ugly head, accept that it isn’t your fault and that it won’t ruin the day. Have a backup plan with you (medication/ hot water bottle etc) and just do what you need to do for you to be OK. I was prepared to sit back and just watch everyone else party if it came to it, and was determined to drink it all in and enjoy myself no matter what. Endo steals so much from me but I was determined it would not steak my enjoyment of this day.

So, those are my tips. I’d love to hear about your experiences as a chronically ill bride and any tips that you have! Hilarious endo related wedding stories also very welcome.

Love,
Claire
xxx