Recovery Update

I think I can safely say that I’m feeling a bit better. I walked around the garden a couple of times yesterday. I’m feeling a bit stronger. I am still having a problem with pain on my left hand side. However, I think this is due to the surgery as that is where they had to open me up to get at my uterus. I have cut back on the painkillers that I’ve been taking: managing nicely with just Tylenol. It’s all looking up!

I have spent a lot of time reading in bed. The latest book was a badly written but very informative biography of Marilyn Monroe. If you were not already aware, she also had endometriosis, suffered a number of miscarriages, endured a number of gynaecological surgeries, had problems with depression and took far too many pain medications with champagne. She even wrote into her filming contract that she would not work while she was menstruating!  I was reminded, as if I needed reminding, how much one’s physical health can affect your mental health. I find it sad that I have so much in common with her. However, unlike Marilyn, I seem to have the strength that she never did. Once again, I have to consider myself a lucky individual!

Foxy

Nightmare

A friend of mine, J at My Autoimmune Life, lost her baby in January.  I had a dream about her last night: I was working in a doctor’s office and chatting with nurses.  I was crying, sobbing.  I was telling them about this patient who’d been through a number of miscarriages and who, when she’d finally had a baby, the baby died after only 13 days.  Then, after suffering the indignity of subjecting her baby to an autopsy, the doctors couldn’t find any reason why the baby died.  The more I cried, the more people came around to watch.  I expect they were trying to console me but they didn’t say anything…

I was sobbing.  I’m still tearing remembering it.  I had to get up at 5:15 a.m. to watch some TV.

While I didn’t believe it at the time, I think my miscarriages were a blessing.  However, there are times when I think God’s got it wrong.  As I’ve followed J, I’ve been through a full range of emotions over the past year or more – delighted for her when she looked like she’d be carrying “Littlest” to term.  Concerned but happy that Littlest came into the world safely.  I thought with medical science what it is, I could relax now and become a favourite auntie who regularly sends great presents.

I felt like I’ve been kicked in the gut when Littlest died.  In this day and age I just hadn’t begun to contemplate Littlest dying.  Oh sure, if we were talking 200 years ago when infant mortality rates were high I may have kept saying my prayer for her but this is 2011!  Tiny babies just aren’t supposed to die!

Then there’s the terrible irony that makes me angry: Littlest couldn’t have asked for nicer parents and she died!  J had tried and tried to carry to term and, when she finally had a beautiful baby I expected her bad luck to be over, you know?  I can completely understand J’s sentiments – that she doesn’t want to talk about God at the moment.  Would you?

I found myself angry with God on her behalf.  How much suffering can He put people through anyway?  I mean, I’d always thought that things generally turned out for the best and after a couple of years you might be grateful for certain things happening that you’d thought weren’t brilliant at the time.

It’s so hard to sit on the other side of theAtlanticfrom a friend in need.  Helplessness is a familiar feeling with my being stuck on another ocean side.  I’ve missed weddings and funerals but this circumstance shook me to the core.  There aren’t many things that would shake my beliefs but this has.

Since I’ve started re-evaluating my life, I’ve started looking into Buddhism.  I don’t expect I should be surprised that I’m finding answers there that Christianity hasn’t provided in this circumstance.  I know I’m cherry-picking my religions again, but it’s the best way for me to decide how the world should be.

Foxy

Depression and Chronic Illness

It is little wonder that people with chronic illness suffer with depression!  If you were told that you would regularly endure vomiting and passing out from pain at least once a month for the rest of your life – you, like me, would see no end of pain.  No relief.  No hope.

Of course in some ways it would be easier if we were bleeding from the eyes because at least then others would be able to easily spot the trouble and treat us with the care and attention we deserve!  But I digress…

A psychologist once told me that depression doesn’t occur in people who are assholes: people who are abrasive, rude, self-assured and never seem to have any problems to speak of who go through life saying “Why don’t you just…”

People who endure depression regularly think of others before themselves and care about what other people think.  Perhaps we’re too busy trying to live up to the expectations of others to take care of ourselves properly?  Whatever the reason, once again, if you’ve got depression brought on by a chronic illness you’re in good company here.

According to http://www.helpguide.org/mental/depression_women.htm The signs of depression are:

• Depressed mood
• Loss of interest or pleasure in activities you used to enjoy
• Feelings of guilt, hopelessness and worthlessness
• Suicidal thoughts or recurrent thoughts of death
• Sleep disturbance (sleeping more or sleeping less)
• Appetite and weight changes
• Difficulty concentrating
• Lack of energy and fatigue

Depression crept upon me slowly.  I didn’t wake up one morning with the uncontrollable urge to cry every 5 minutes.  There wasn’t one particular incident that made me wish I were dead.  The feelings of worthlessness I had stemmed from a number of suspicions and experiences that are too numerous to mention.  It stemmed from an unhappy marriage and miscarriages.  I felt I was unable to be a woman because I was unable to have a baby.  I felt that if I could only have a baby, I would be vindicated because I could finally achieve something.  How awful it is that – for a woman who feels worthless – I couldn’t even produce offspring which is something that most women simply lay back and think of England to achieve!

It’s little wonder then that where and when I cried only increased.  For years I felt I was totally alone.  In trying to find some happiness I made friends but felt empty.  In the end, it seemed that the only good thing in my life was my friendship with Helios.  When I asked God for a less stressful life, a more simple life, I believe He sent me Helios.  I tried a number of things to try and break through my discontent: I wrote a diary, I had numerous sessions with a psychologist, and ultimately I changed my life entirely, for the better.

I addressed everything at once: my health issues, my employment, and my personal relationships.  I started taking neural inhibitors for my incessant vaginal pain from bacterial vaginosis.  I separated from my first husband and started seeing Helios regularly.  I divorced and had my second laparoscopy.  I started taking metformin to control my insulin resistance.  I started using HRT to control my PCOS symptoms.  I started taking St John’s Wort in an effort to stop crying.  I divorced and purchased a small flat with the financial settlement.  I took the birth control pill and then stopped again – because the St John’s Wort counteracted with my birth control.  I took Milk Thistle for my PMT.  I rattled with the tablets I was taking.  I worried about all the tablets counter-acting with one another.

In the middle of it all, Helios was there and supported me.  He looked after be after my second surgery and then my third.  He never made me feel weak or guilty.  We married despite all the physical problems I have.  He was always gentle and kind to me.

Even after my life had completely changed for the better, I was still unable to shake the feeling that my head was still stuck in a dark cloud.  I knew I was happy but I just didn’t feel it.  I finally gave in and discussed the matter again with my doctor who again recommended prozac.  This time I took it.  Within the year I was finally myself again – and happy.

Just because I’ve had depression doesn’t mean that I am weak.  I am strong because I was able to ask for help.  I care about others which means I’m a good person.

Foxy

Betrayed by my body?

RT @PelvicHlthPsych: Mary Lou Ballweg – women with #endo feel betrayed by their bodies; others do not believe their suffering.

A rebuttal to the above retweet:

The thing I object to with the above quote is that “betrayal” is such a strong word.  I don’t mind my body.  It could be worse.  If I’d had the choice, I’d have chosen another body.  But betrayal?  No.  I’ve got an abnormal body but that doesn’t mean that I feel betrayed by it.  I’ve felt disappointed, distraught and unable to feel like a woman when I had my miscarriages.  I’ve been depressed thanks to the endometriosis.  Part of the reason my first marriage failed was due to endometriosis.

However, I am so much happier now that I consider all that went before to be a blessing in disguise.  The pain is something I continually endure.  Of course I’m not happy about it but I accept it as part of me as much as my fingers, toes and head.  My pain is something that helps me appreciate the good things in life – including my pain-free days, my fantastic Helios and supportive friends.  I would be a completely different person without my endometriosis pain and who knows if I would like that person?  I like myself the way I am now – and that includes the endometriosis pain.

Foxy

Not just Endometriosis but also DES

I’m showing my age now.  Between the years of 1950 and 1975 in the UK, women who had had miscarriages were prescribed diethylstilboestrol (DES).  DES is a synthetic oestrogen.  Unfortunately it had several side effects that were unknown or ignored at the time.  Those of us who have heard of DES sometimes refer to it as the “hidden thalidomide”.

The side effects include an increased risk of breast cancer in the mothers (the women taking the drug).  The resultant children have a higher risk of fertility problems, pregnancy complications, an increased risk of testicular cancer for the baby boys and an increased risk of vaginal cancer (CCAC) for the baby girls.

The sad fact is that the increased risk for clear cell adenocarcinoma (CCAC) was discovered in 1971 but the drug continued to be prescribed for another four years in the UK.

Mom has endometriosis.  Her symptoms weren’t as severe as mine.  Her endometriosis was discovered during her hysterectomy – she was in her 50s.  I think I’m right in saying that her hysterectomy has helped the few symptoms she had.  (This isn’t the case for every woman with Endo!  Bearing this in mind, I’m not begging for my hysterectomy just yet.)  For the record, she had her hysterectomy when doctors suspected she had cancer – it was the only time I’ve thought “Thank God it’s only Endometriosis!”

Bearing in mind endometriosis is a life-long problem for a woman, I suspect Mom’s endometriosis was the reason for the miscarriages she suffered before I came along.  Instead of looking for endometriosis the medical professionals in 1970/71 gave Mom DES to prevent another miscarriage.  I was the result.

I remember when Mom told me about her exposure to DES – she was terrified that she may have inadvertently hurt me.  My first reaction was “Well, if you needed the DES, then I’m grateful you took it!”  Now I’m angry that those idiots in white coats caused my mom distress.  I’m also angry at them for thinking that they’re above any ramifications that arise from their tinkering with women’s bodies!  How bloody dare you prescribe a drug to a pregnant woman without knowing the long-term risks!  Did you take the Hippocratic Oath?  How could you think that you were “doing no harm” if you didn’t know the risks?!?

If you have questions – check out the DES Action UK website at http://www.des-action.org.uk/des.html.

Foxy

Endometriosis March: How I live with Endo

How I live with Endo has changed over the years.  When I was 12, the short answer was I didn’t.  I was told by an ignorant doctor that I had “cramps” and that pain was to be expected.  What doctor would consider a child vomiting from pain to be remotely normal??  When I was in my teens I suffered greatly.  I missed some school from pain and when I didn’t stay at home, I would miss key points in classes because I was so zoned out on painkillers.  I don’t really know how I got accepted to university but I must have been smarter than your average bear.

In my 20s I discovered birth control and this effectively masked my symptoms totally.  I had nearly a decade of feeling like a normal woman.  My periods were light and virtually pain-free.  I was relieved from my painful burden.  I did reasonably well at my university course – I even made the dean’s list one semester.  God, I miss those days!!

In my 30s I began to try for babies; what little success I had ended in miscarriage.  The pain was as bad as ever.  I remember once my ex-husband, Ramman, said to me that my pain was ruining any holiday time that we ever had (including when we went to Portugal, the West Country and Greece).  Of course he was insensitive: it’s not as if I was bleeding from the eyes.  He couldn’t see why I was in pain.  When I was finally diagnosed at the age of 35, my ex-husband still couldn’t understand why I was in so much agony.  He made the point that he wasn’t particularly interested in gynaecological matters.  His inability to attempt to sympathise is another reason why he’s now my ex-husband!

I wonder how many other relationships have been destroyed by Endo?

Currently I take birth control for 9 weeks and then allow myself a short period before my lengthened cycle starts again.  It sounds easy enough but PMT can last weeks and I tend to carry a bit of excess water.  However, when faced with the choice of my familiar pain or PMT, I’d rather a bit of PMT (which I treat effectively with Milk Thistle) and feel a bit podgy.  Lucky for me, Helios is sensitive to my plight, he’s never considered me lazy because I need to lay in bed with a hot water bottle; he doesn’t give me any extra stress.  In fact, he told me recently when I was bemoaning my weight/size that I shouldn’t lose any weight: he likes me just how I am.

Foxy

Endometriosis March: Endo, PCOS and Infertility

I saw someone I used to work with when I went to the grocery store with Helios today.  As we climbed out of his Volvo (which is the size of a small continent), I saw her.  I’ve not seen her in years.  She looked great.  Immediately I marched over and asked her how she was.  She smiled, waved and pointed at the monstrously large car and said “Aren’t you getting the baby out?”

It’s the littlest questions that have the potential of knocking you for a six.

I didn’t bother explaining about the Endometriosis, the miscarriages, the incessant pain, the PCOS, the depression; I just smiled and said I never had babies.  When is a good time to tell old friends about this sort of thing?  I suppose I didn’t mention it because I didn’t want to start to sound militant in the middle of the grocery car park.  Can you imagine?  “This, then this, then this, and another thing – pain, suffering, pain and more pain.”  Poor thing would dread running into me again, I can assure you!  But then, this is Endo Awareness Month; I should have at least mentioned it.  Perhaps I’ve gone too British for my own good?

Lucky for me I feel OK about bumping into her.  Had I run into her a couple of years ago I probably would have been devastated at her logical observation: big car = little family.  Now I don’t feel angry or upset by it.  I don’t feel that she’s attacked my femininity.  I haven’t broken down in tears because I cannot have children of my own.  It’s a testament to my state of mind now as well as my relationship with Helios and Apollo that I don’t feel depressed.  All the pain that I’ve experienced has made me grateful for the peace and calm I feel now.  As she drove away, I waved and smiled at her.

Foxy

Miscarriage

My mom and I were talking about my blog.  She is sure that I’ve had three miscarrages.  For those of you who never want this to happen or never want to know what it feels like – look away now.

 

It was between 2003 – 2004 when I was still in my first marriage and we were unofficially trying for children.  Each time it was roughly when I was expecting my period so I was unsure as to the cause of the pain.  Although the pain was the worst I’ve ever had, I didn’t bother calling the doctor – perhaps subconsciously I wanted to remain unsure?

 

For some strange reason each time it happened in the middle of the night – I have no idea why.  I woke up with sudden unbearable pain – not like my normal period pain – much much worse.  I’ll give you an example.  My normal period pain leaves me in the foetal position in bed rolling around in agony until the painkillers and anti-inflammatories kick in.  Sometimes I also need a hot-water bottle to help me cope with the pain.  This was different.  I felt paralysed.  I could barely breathe.  I couldn’t even tell you where the pain was in my body.  It was overwhelming.  Then, as suddenly as it started, it stopped.  Just as I was wondering what that was all about, I felt movement and I ran to the toilet. 

 

That was the first time.  The second time it happened in just the same way except this time the pain was not quite so overwhelming.  The pain was still extremely intense but I knew it was going to be short-lived and, as before, it stopped and I ran to the toilet.

 

The last time it happened I finally had the ability to feel what was actually happening without the pain overwhelming me.  It felt like my womb was wringing itself out.  The realisation that I probably had had a miscarriage (and the likelihood that I’d had two others) shook me.  You always think that, it’s the most natural thing in the world to get pregnant and to do so on your own terms – there are so many statistics about women putting off pregnancy until later in life.  I didn’t think about infertility happening to me. 

 

I never told Ramman that I thought I’d had miscarriages.  The pain in each instance was too great for me to even move and, once it was over, I didn’t see the point in waking him.  I always treated him like he was the more important one of the two of us and I thought it was important not to wake him.  Can you believe that?  I was uncomfortable waking my husband and getting medical treatment because he was more important than me.  Back then my ex-husband used to say that it didn’t matter if it took time to get pregnant and we’d just keep trying.  Unfortunately there were enough problems in the marriage that I suspected maybe it wasn’t meant to be.  I really didn’t fancy having IVF when I wasn’t sure if we should have children!

 

Luckily each time it was so early in the suspected pregnancy that I didn’t know I was pregnant – possibly only a few days or weeks.  In no instance did I consult a doctor – mainly because there’s nothing they can do for you after the pain is over, can they?  So until I discussed the issue with my mother, I wasn’t sure myself if the pain was connected with a miscarriage.  She had had a miscarriage before I arrived so she was, sadly, familiar with my story.

 

Now, years later, I find myself contemplating why and what if.  I can’t help but think that women sometimes torture themselves with the questions of why and what if?  The fact of the matter is that I’m actually really lucky I didn’t have those children.  But then I contemplate what if I’d have met Helios earlier in my life.  If I’d met him earlier would I have been able to carry to term?  As much as I know these questions are counterproductive, I cannot help but think it sometimes.  I’m actually grateful I didn’t have children with Ramman but that doesn’t mean that I wouldn’t have wanted children with Helios. 

 

With the commencement of a new relationship (and I’m not getting any younger!) I thought long and hard about babies.  Ultimately I decided against it.  Why?  I think the answer is different for every woman.  I knew that I was only enamoured with the idea.  I didn’t actually want the hassle, work and responsibility of a baby – the romantic in me wanted to hand a newborn over to Helios and saying “Look, here’s one we made earlier!”  But that was it.  I didn’t want the sleepless nights, the patience, the constant colds, exhaustion, day care, school, clothes, snot, etc. 

 

As happy as I am with the decision, I can’t help but torture myself sometimes wondering why and what if I were younger, etc etc.  It doesn’t matter that the decision is made and I know it’s right for me.  What seems to matter most is the self-torture here.  It sounds a little self-destructive, doesn’t it?  Why do I do it?  Well, the usual situation I keep running over and over in my mind is that I meet Helios just before I turn 30 and we immediately decide that we want children.  I think I would have wanted children no later than 30 mainly because since then I’ve been getting more and more tired and bogged down in my symptoms.

 

Luckily Helios is very supportive. He said that he wanted me to be happy.  He even said that he’d be happy to have children with me – but I’d have to want it 100%.  Being honest, I just don’t.  I am too happy with my life at the moment.  If it’s not broken – don’t fix it.

 

Foxy