This isn’t necessarily the easiest post to write.  My journey with endometriosis has been incredibly disheartening and frustrating, and thinking about it too much can send me into something of a depressive spiral.  However, I’ve alluded to my experiences a number of time in this blog, and I think it’s time I wrote out the whole story.

I know I’ve said this a number of times in previous posts, but for the newly diagnosed, please don’t think that my story will be your story.  You may suffer far more than me.  On the other hand, you may escape practically unscathed.  Our endo is as individual as we are.

 

I suppose my story begins at age 15.  This is when I first remember my period pains becoming so bad as to become truly disruptive.  I would have to leave class, take two panadol and two ibuprofen, which made only a limited difference, and hug a heat pack.  It was a dull ache low down in my pelvis, like someone had put a puddle of lead there, and it was slowly poisoning me even as it weighed me down.  There was no escaping from it and no easing it.  Heat packs provided me with a comfort I couldn’t really get anywhere else, but didn’t remove the pain.  All I could do was sit or lie down.  I would get really tired.

This was my first exposure to people telling me that it was just period pain and I needed to not let it rule my life.  The first time I left art class to go to sickbay because of the pain, I remember the school nurse being frustrated and dismissive, and telling me “You can’t just stay here.”

I think it was shortly after that that I was told that pregnancy might help (something I’d already been told about the incontinence I’d suffered since age 5.  How pregnancy, famous for ruining bladder control, could help incontinence, I’m still not sure).

Anyway, over the years, my period pain got worse and my periods got longer, heavier, and with a much shorter time-frame between them.  I was eventually put on the pill at age 18 by my lovely GP at the time.  I think she was the first one to endometriosis, but said it was something we would only need to explore if the pill didn’t work.  At this point, I was having a ten-day period, being period-free for two weeks, and then having another one.  I would bleed and feel pain for all ten days.  The pill (Yasmin) was a miracle drug for me.  Suddenly I had three whole weeks in which I didn’t have to suffer, and my pains and bleeding reduced to a much more manageable 5-7 days, which eventually whittled down to 3-5.  The best part was skipping periods.  Under supervision by that same GP, I got my periods down to just 3 or 4 a year.

Unfortunately, the wonderful effects didn’t last.  By 23, my pain was worsening.  By the time I finally got a referral to a gynaecologist at age 25, I could no longer skip periods without pain and break-through bleeding, and the 3 days of pain (which were edging back up to 7) essentially left me bedridden.  I was also feeling the full effects of a depressed immune system, although I didn’t know it then, with back-to-back sinus infections that forced me to take so much time off work that they significantly delayed my promotion from paralegal to lawyer.

The gynaecologist was quick to diagnose me with endometriosis.  It didn’t show on any scans.  She briefly mentioned trying medical intervention, but thought that surgery would be the best option for me.  Guided by her, I agreed.  I got my diagnosis in April, I think.  I got married later that year and had four wonderful months of marriage before my surgery in November.  I started my work as a lawyer.

That’s when everything went wrong for me.

I mentioned in my previous post that I suffered with pain and swelling from the gas for around 10 days following the surgery.  When that finally cleared, I realised that it had been masking significant pain and swelling for other reasons.  My surgeon (who was also my gynae) was surprised that it was taking so long for me to recover and said I had an infection.

I went back to work.  It was very hard and I couldn’t always stand up straight.  I didn’t fit in many of my work clothes (I had previously been a fairly fit and trim size 8-10.  The swelling I had made me effectively a 14).  I couldn’t exercise at all, which was disappointing because I’d got into running and fitness in a big way earlier that year.  By the time I got home in the evenings, I could barely move.  The pain was bad.  My husband kept trying to get me to hospital, but I kept repeating the gynaecologist’s words – give it time.

The Christmas holidays were a welcome break, although didn’t bring me much relief.  I went back to work on the new year and managed two days before the pain became so intense I had to go to hospital.

After numerous tests and tears and a lot of advocacy from my husband, I was finally admitted and kept in for several nights.  Then they concluded that they couldn’t do anything and kicked me out.  I had an emergency appointment with my gynae.  Thus began the drug trials.

I tried Lyrica, which didn’t work and gave me horrible tingling pains in my hands and feet, gradually moving into my legs and arms.  I tried tramadol, which made me babble and cry and shake.  I tried indocid, which caused me shocking chest pain when I tried to lie down.  I moved from Yasmin to Valette.  I think there were others, but I forget.  No change.  My gynae had a variety of theories, from exposed nerves to my body just not liking surgery, and eventually settled on the theory that some endometriosis remained in the body and had been irritated by the surgery.  She could give me no end date for my pain and bloating, and no cure.  She said further surgery would make it worse.

I don’t know if the pain actually faded or if I just learned to adjust to it, but gradually I got to a point where I could go back to work part-time.  It was now March.  I thank God for my extremely supportive boss, who protected my job while I languished.  My little stint of not working had used up all my paid leave, so I wasn’t bringing in any money.  I had nothing to distract me from my pain.  Between that and the wild ride my hormones were on, I was suffering from terrible depressive episodes.

I tried a second opinion.  The doctor I saw was very highly regarded by other people I knew with endo, but I didn’t click with him.  His internal scan was sheer agony and he just wanted to try experimenting with further medications.  I didn’t have the time and money for that.  My career was slipping through my fingers.  I couldn’t cope with being told to wait more.

So my husband dragged me along to a third opinion, this time in a different city, three hours away.  This very practical and well-respected surgeon said he thought surgery was the best option, combined with different drugs.  I didn’t know whether to cry from relief or terror.  I was assailed by doubts even up to the day, and several times told my husband I couldn’t go through with it because I was so scared of getting worse.

Thankfully, I didn’t.

I had to pay through the nose to get the surgery done quickly, burning ruthlessly through my savings and already in debt to my parents for medications and suchlike.  Three weeks after my initial appointment with my new surgeon, I was under anaesthetic again.  Whilst I was under, I had the mirena implanted.  He found endometriosis on my uterus and bowel.  He couldn’t remove the stuff on my bowel, but he got all the uterine endo.

When I woke up, I recovered much more rapidly from the surgery, with the shoulder pain disappearing quickly and the bloating reducing within a week.  The pain was still there, a low-level buzz to remind me that I was inescapably damaged, but I could function again.  I could work full time.  I could go for long walks.  I couldn’t run without my bowels giving out in an embarrassing way, but I was prepared to give that up for what quality of life I had regained.

To my intense disappointment, things got worse again in July, whilst my husband was also hospitalised, so I was struggling alone.  I had my first period since the operation, and it lasted for 20 days.  It was light, but it hurt.  My surgeon put me on Visanne.  That was a disaster – I got a rash of painful, itchy pustules across my scalp, which spread down over my face, chest, neck, shoulders and back like acne.  It did nothing to alleviate my pain.  Thankfully, my surgeon took me off it after three weeks.  Things did improve with time, and improved again when I got the implanon in October to try and deal with my increasingly bad digestive troubles.  I also went on the low FODMAP diet, which helped enormously, and which I’ll discuss at length in another post.

Fast forward to May, more than a year after my second surgery, and sadly things weren’t going too well again.  Another flare-up, this time with awful back pain and gastritis.  Once more, I visited the emergency room a few times, and each time was bounced back onto the street in the wee hours.  Once more, my work attendance was under intense scrutiny from HR and from my new boss.  Once more, my absences meant I was losing income.

It’s mid-July now, and although I’m back at work, I’m still really struggling.  I was hit with a sinus infection again right after the flare-up, which is causing more endo pain as my immune system has to pick its battles.  As I write this, my pain is about a five and I don’t think I’ll actually be able to have the shower I was planning on.  I’m not as swollen as I’ve been in the past, but I’m not going to fit into my jeans.

A lot of things have hurt me emotionally as well as physically over the two years since my diagnosis.  I am in mourning for the life I had.  I would give anything just to have my painful periods back and not have these erratic, lengthy flare-ups.  At least I knew when my period was coming and I could fore-warn work about the time I’d need off.  Now, I have to assess myself every morning.

I miss my old body, which had strong, leans legs that I really liked.  Now my thighs are a bit chubby.  I don’t mind chubby thighs, but I still feel a disconnect with these ones, because they aren’t the thighs I should have.  My stomach isn’t as flat as it was, and my waist isn’t as small.  My hips are bigger.  My arms don’t really have muscles.  I don’t fit the fabulous red bootcut pants I loved prior to my first surgery, and the longer this drags on, the more I feel I never will again. I don’t like the way I look at all.  I hate it so much I won’t even go swimming.  I’m not fat – far from it –  but it isn’t whether I’m fat or not that bothers me.  It’s the fact that I don’t look like the old, healthy, hopeful me anymore.  I miss her a lot.

I miss being able to go on long walks at the drop of a hat with my husband.  I miss spontaneity and predictability.  Before I could commit to an event weeks in advance, or drop everything to go out with a friend.  Now I can’t even commit to the 30-minute drive to my parents’ house on a weekend.  I can only say, “maybe” and hope for the best on the day.

I can’t really remember what it is like to wake up without pain, with a flat tummy, with energy and pizzazz.  Pain, bloating and exhaustion have been my constant companions for the past several months now.  It very quickly erases your memory of normality.

The longer a flare-up goes on, the more I lose hope.  I worry constantly about my job, and being able to attend each day is a huge pressure.  If I lose this job, I worry no one else will employ me, and my legal career will go kaplooey.  That thought really upsets me – I do important work and I love it, and I’m not bad at it at all, but I could lose it all.

I’m under a lot of financial pressure, and I really miss the ability to be able to buy what I want, when I want it (within reason).  This week I am considering whether or not I can afford a luxury like bananas or whether I should just stick to bread.  I can’t buy clothes the way I used to (maybe not such a bad thing, as I had a serious problem), because now I not only have to worry about whether I can afford it, but whether it will be an item for a bloated day, or a small day.  I hate the feeling of not contributing financially, especially as my husband is self-employed so I’m the only one with a fixed income.

I feel like a useless lump at home, because I won’t be able to help my husband clean the house or walk the dog today.  I’m going to have to lie down on the couch once I’ve finished this, because sitting up is hurting.  I’m really worried about being well enough for work on Monday, and that means doing nothing all weekend.  I’m sick of being a prisoner in my own home.

I have wished a million times over that I never had that first surgery.  I don’t feel that I’m exaggerating when I say it ruined my life.  It certainly ruined the life that I was having, and that I could have had.  I have a different life now.  It’s not all bad by any stretch of the imagination, but it is much harder and involves a lot more pain, emotionally and physically.  I’m tormented by visions of what I could have had if I’d never gone to that first gynae, and it is very hard to let go of that, because there is always that faint, absurd hope that one day I may be sufficiently well to live that life again.  I’m angry at the surgeon, because she never suggested that I might get worse, and she never had an answer for me.  I would never recommend her to anyone, but that’s too late to help me.

So I live in this weird balance between hope and despair, between accepting my new normal and raging against it.  It’s a rollercoaster.  I’m exhausted.  Some days I come very close to giving up, whatever that may entail.  Other days I’m amazed at my own strength.

Today will not be one of those days.  Today I will cry a bit, but ultimately be ok.  I’ll watch some Handmaid’s Tale or Star Trek: Voyager and grit my teeth and get through it.  My husband will come home from his friends and look after me.  My cat will sit patiently next to me or lie on my stomach and purr, and my dog will follow me around and make sad eyes at me.  She isn’t really sad.  She just does that.  I’ll eat risotto for lunch.  I’ll go and sit in the sunshine for a while, if I can get dressed.  I’ll go to bed, and sleep deeply, and wake up tomorrow and re-assess and figure out how I’ll get through the day.  Rinse and repeat.

Another week awaits.