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Fatigue

I’d say over the past six or more months I’ve needed extra sleep at the weekends in order to get by.  I go to bed at a reasonable hour on Friday night.  I’m up at the usual time on Saturday morning.  I have an extra hour or so during the day and repeat the process on Sunday.  The fatigue has grown from just needing a nap on one of the weekend days to both weekend days.  Just before I go to bed for my afternoon naps I get the oddest sensation – I’m not exactly tired, it’s more as if I’ve already gone to bed and I’m dreaming.  Someone has switched off my brain and my eyes are showing their “no one’s home” signs.

During the week I’ve coped reasonably well without the extra sleep during the day.  Aside from PMT times, I’ve been alert and sharp.

I was a bit disturbed when my brain switched off last night.  About 8pm I was finishing off a few emails, facebook posts, etc when all my sense was switched off.  Despite being keen to watch the rest of the football game, I was unable to keep my eyes open and I dragged myself to bed at 8:30.

I can’t help but wonder if there was something different about yesterday that made me more tired than usual: I was having some sharp pain in my ovaries during the day.

Or is my body reacting to the exercise I’m getting in going to and from work?  The last time I got this much exercise it was the summer of 2010 and I was going out at 6am for a walk to and from the station and still had plenty of time to get ready and meet my friend to carpool to work.  Of course all that stopped when those horrid miscreants made me think I was going to be murdered and my mangy carcass thrown into a field…  I still occasionally think about that day but I’m not filled with dread anymore.  My home town is stupidly safe.  I rarely have to remind myself of it now.  Also, these days I carry items that would help me defend myself – nothing scary.  Sometimes I just roll up a newspaper – a jab in a delicate place with a rolled up newspaper would easily enable me to slow down an attacker enough to let me get away safely.  Don’t let the Hollywood films fool you – if you’ve managed to stop an attacker – run for your life!  Don’t stop until you get somewhere safe.  Then call the police.

Or am I not feeling myself because I need to have a period? The first day of my most recent one was 27thAugust.  I probably should have given myself one when Helios and I were on holiday in  November but I was so busy that I didn’t want to – and who could blame me really? My periods are bad enough now that I really need three days to get the worst of it out of my system and the next time I have enough time off work is at Christmas.  While I’ve got all the time off between Christmas and New Year, it won’t necessarily be a pleasant holiday.

Hanging on until Christmas may be a challenge because, aside from the curiously-strong fatigue, I am having dull pain most days, sharp pain in my ovaries at times and a slight bleed through on some days.  This after I insisted that I don’t have any blood apart when I’m getting my period…  I doubt it’s a sign of something sinister.  I’m probably still not accustomed enough to having longer and longer cycles.

When I finally get my surgery dates I’ll think about having another period while I’m off with that – with any luck I’ll be on so much medication that any more pain won’t be an issue.  (?)

It’s at times like this that I’m ever so grateful that I’m accustomed to being organised because my brain isn’t working properly. For the past couple of days, particularly in the afternoon, I’m getting that woolly-headed feeling where I’m in a bit of a daze.  I used to feel like this when I had fruit and yoghurt for breakfast and I’d wind up being in a mess for the rest of the afternoon.  However, I know it’s not my diet because I’m having my usual egg/mayonnaise sandwich in the mornings (on low-GI bread) and for lunch for the past couple of weeks it’s been turkey with tomato, green pepper, low-GI Rye crisp breads and humus.   A couple of days ago I tried a wheat pita at lunchtime with my obligatory seeds in and within an hour I looked about six months pregnant.  when I’m most certainly not!  Did I have a reaction to  wheat? Within a few hours all had settled back down again but the incident made me wonder if there is anything else that I ought to be avoiding…  I’ve made an initial appointment with a food tolerance expert to see what else I can be doing.

You may remember that I’m on a slightly restricted diet anyway due to my insulin resistance.  When I first started getting diagnosed with my many maladies, I was told I had PCOS and insulin resistance.  For the insulin resistance, I was told to limit my carbohydrate intake to 20g per meal per day; I started lose weight and feel like my old self after a month or two.  Of course, I was depressed and my endometriosis diagnosis was in my future.  My entire life needed changing in order to feel happy but the change of diet was a good start.  At that point I didn’t notice any odd bloating, but so many things on my body seem to have given up working since then that I feel a bit of a lemon!

My interest was piqued when one of the gals at work did a food-intolerance test just about three weeks ago and now she’s been following the regime and she’s looking amazing.  I don’t know how much weight she’s lost but because she’s only taking on board exactly what she needs, her body is obviously happier for it.

Foxy

My Fourth Laparoscopy

I recently went to the surgeon who gave me a number of choices; I have come to the conclusion that a laparoscopy to clear my endometriosis is the best choice for me because a hysterectomy is too drastic a change for me and trying a drug to give me a temporary menopause is generally not well received (from what I’ve read).

My first laparoscopy occurred in May 2005 and I was diagnosed with endometriosis.  Back then I wanted to have children and was marred to the first husband.  My diagnosis and persistent symptoms – even after the surgery – was to prove another nail in the coffin of our failing relationship.

My second laparoscopy occurred in March 2007.  By this point I was waiting for my decree absolute; I lived in a sweet little flat and my boyfriend stayed with me immediately after the surgery – although I struggled with symptoms and depression I couldn’t have had better support.

My surgeon put me on HRT to help with my PCOS symptoms – which turned out to be a BIG mistake as it fed my endometriosis.  My pain quickly became debilitating.

My third laparoscopy occurred in November 2008.  I was recently remarried and we’d decided not to have children.  My pain was such that I was desperate for a drastic change and I begged for a hysterectomy.  Helios and my surgeon talked me out of it and I was transferred to an endometriosis and pelvic pain specialist.  The surgery was highly successful – I went from a 9 or 10 on the pain-scale to a 1 during my period and nil every other time.

Plonk me in a chair and send me home!!

Since then I’ve coped with my pain by using birth control (which contains some oestrogen because the progesterone-only pills make me aggressive – GRRRRRRR) and then I started tri-cycling my pills: I have a period once every 9-10 weeks.  Since then, upon talking to my colposcopy nurse, I have been trying to extend the time between periods even longer.  I’ve not managed to make it 6 months between periods yet but am looking into it.

I’m also grateful that I didn’t have a hysterectomy.  I was sorely tempted to have it in my deliberations for my upcoming surgery, but this time I have sought treatment before I’ve become frantic about my symptoms and it’s given me time to be objective about what I need.  It’s so much easier to contemplate the choices when you’re compos mentis!

Helios is coming with me to my appointment on Tuesday where I’ll tell the surgeons what decisions I’ve made; we can discuss what the next steps are and when I can expect things to happen.  I’ll be sure to update you as soon as I have more details.

Foxy

Tell Me About Yourself Award

How exciting!  Thanks to Sandra at Learning to Walk Alone   for this award and for the comfort that I’ve found in reading her blog.  Like my dad, her husband died of Parkinsons.  I’ve also found her unwavering faith to be an inspiration.

The rules for receiving this award are:

I must tell seven things about myself and I must pass on the award to 15 other great bloggers.

Here are seven things about me:

  1. I was once told by a Venezuelan that I “have a lot of rhythm for a white girl” when I danced with him.
  2. I stopped biting my nails when I was a kid by chewing gum instead.
  3. I am a Manchester United fan and have been to Old Trafford on a number of occasions to see games and once to take a tour.  English football rocks!
  4. I like boogie boarding in Cornwall because I don’t have to try to stand up on a board and my eyesight is so bad that I wouldn’t manage to survive waves larger than those found inEngland!
  5. I love watching Charlie Chaplin films, WWII documentaries and visiting museums.  I expect that officially makes me a nerd.  Oh dear, what a shame.  (!)
  6. My favourite painting of all time is The Lady of Shalott by John William Waterhouse, based on a poem of the same name by Lord Alfred Tennyson…  Wonderful!  John William Waterhouse The Lady of Shalott 1888
  7. My dream job would be to work for a charity organising various fundraising events.  I am painfully well organised and love the sense of achievement when it all comes together successfully.  The biggest event I’ve ever organised was an auction of promises that raised about £2000 – and I did this as well as my full-time job.

The 15 blogs I’m passing this award to are:

  1.  The mud and the lotus
  2.  My autoimmune life
  3.  The Dexterous Diva
  4.  Verity PCOS
  5. The Warrior Woman with Endometriosis
  6. Endometriosis: the silent life sentence
  7.  Chronically creative
  8.  My Endo Diary
  9.  I will not suffer in silence
  10.  Endometriosis Update
  11.  Bangable Dudes in History
  12.  Cool Chicks from History
  13.  Pictures of War (which is currently banned inChina)
  14.  Wearing History
  15.  History and Women

Each blogger who receives this award must write seven things about themselves and then pass the aware onto 15 other bloggers.  To copy the award logo, right click, select copy, go to your blog post and click paste.

I expect some of the above won’t “accept” the award (Verity is a charity and therefore not run by one person) but are most certainly worth a look!

Foxy

Choices, choices

I’m going to take the time to thrash out what I feel are the pros and cons of the treatments I’ve been offered by the consultant I saw on Tuesday.  As I find thinking on the page just as helpful as talking to Helios and my mom, I hope you don’t mind my “thinking out loud”.

  1. Drug Treatment (Lupron)

Pros

  • Temporary effect
  • Won’t have a period at all while on it

Cons

  • Will take time to take effect (which is a bad thing if I am trying to cope at a full-time job)
  • May not work
  • May not have the same effect as a surgical hysterectomy
  • Would need to take HRT (progesterone) which has been known to make me crazy.
  1. Laparoscopy to treat endo

Pros

  • I’ve had this before so know what to expect
  • If done well, can significantly reduce pain for a period of 2-3 years for me (but not guaranteed!)

Cons

  • It’s still surgery and has risks
  • Will still need to take birth control tablets
  • Will still get periods
  • I know for certain that pain will return in due course
  1. Hysterectomy (but retaining ovaries)

Pros

  • Never have a period again!!!!
  • No need for birth control

Cons

  • Endo will certainly return and I will need to ascertain what new symptoms to anticipate
  • Need to find out if I will need hormone treatment for endo and/or PCOS post surgery
  • Irreversible
  • Need to find out how to ascertain when endo has spread enough that I need to see a doctor again
  • Will my hormone levels still rise and fall every month?
  • Will it affect my physical relationship with my husband?
  • Not sure if it will positively affect my pain levels
  • Don’t forget all surgery has risks
  1. Hysterectomy (with ovary removal

Pros

  • Never have a period again!!!!!
  • No need for birth control

Cons

  • With the added element of ovary removal – hormone levels will be a complete unknown and therefore impossible to anticipate.
  • Will need to take HRT post-surgery
  • I will still have endometriosis – so need to ascertain what new symptoms to anticipate
  • Irreversible
  • Will it affect my physical relationship with my husband?
  • Unsure if it will positively affect my pain levels
  • Osteoporosis runs in my family so, at the very least, I would want a strategy to combat this.

My current thinking is to reject the chemically induced hysterectomy – but not outright.  If I have surgery and then try the lupron, I may find that an appealing option because, if the lupron is difficult for me, I would know that my pain would not be as bad when I came off it.  I don’t know if they’ll let me try it in that order but that’s what I’d like to do.

As appealing as the lap is, I am concerned that my doctor may be right in her thought (I won’t have a diagnosis until the womb is taken!) that I may have adenomyosis.  The symptom that tipped her off was post-intercourse back pain.  She examined me with a trans-vaginal ultrasound (or I call it sonogram on a stick!) and found that my uterus seemed “painful”, that she expected it to be pliable but it seemed very solid and had no movement.  She asked if I had a history of fibroids and I had the rare opportunity to say “no, not that one doc!”  If she’s right then the lap won’t go far enough in removing my pain-giving beasties…

Since my examination, when Helios and I were intimate, I experienced discomfort on climax.  It wasn’t horrible and, because I was enjoying myself, I called it “odd” at the time because I didn’t want Helios to stop.  I am so grateful that Helios hates me in pain.  Pain is not sexy.  However, the incident served to cement the thought in my mind that if I don’t do something to get my uterus out, that I may be having more discomfort during intimacy.   This could lead to less frequent intimacy which, over a significant time period, may lead to a change in our relationship.  I think I’ve said it before but it bears repeating – now that I’m in a healthy and happy relationship, I want to do everything in my power to ensure that it remains so.

My next choice therefore is the hysterectomy but retaining my ovaries.  The significant plusses to this are 1) I will never have a period again, 2) with ovary retention I can ask to try the chemically-induced hysterectomy post-surgery in order to suppress the return of my endometriosis and 3) if I do have adenomyosis, the discomfort I experience on intimacy will completely disappear.  However, if it’s not adenomyosis, then I may have another new pain-giving beastie and I’ll be a medical miracle worthy of study!!

As with all my choices, I assume I will need further surgery for endometriosis in due course – while that will be the case for all my choices, I am slightly in the dark as to what form of pain I will encounter next if I have my womb removed.  Will it be worse?  Will endometriosis spread throughout my pelvis?  Perhaps it will want to travel further afield, get a train ticket and go around the UK?

At the moment I’m completely discounting a full hysterectomy with ovary removal.  I feel this option is simply a bridge too far.  I feel that I need to retain my ovaries (as PCOS-ridden as they are) in order for me to feel a bit more womanly.

With all the usual frustration of my conditions, why oh why can’t I just have an easy choice?  Just for once wouldn’t it be nice to be given a tablet and told “You’re cured!  Now off you go, I have sick people to attend to!”  Nope.  We’re stuck in the queue of sick people, tapping our fingers against our new list of ever-growing symptoms.  I wish I had a crystal ball to see the different ramifications of each option so I could choose the option I can live with.

Isn’t it ridiculous!  I’m sitting here crying because my options are so crap that I have to choose one that is the least worst!  When else does anyone do this??  Oh yeah.  When we choose our politicians!  That’s the only time when healthy people can begin to contemplate how CRAP my life has become thanks to endometriosis!

Wishing you a brighter future

Foxy

Supercalafragilisticendometriosis

Monday morning I got up at the usual time and went to London where I met my friend at Waterloo and then we walked to The Hilton at Park Lane for our spa treatments.  This is the friend who has a hard time saying endometriosis and instead turns it into a word that Mary Poppins would be proud of!

On the one hand it was a great spa experience because it was relaxing and the masseuse got rid of the knots in my shoulder; on the other hand it wasn’t nearly as good as I’d hoped – we were in the basement, there was only one toilet for the four gals who were doing the treatments so we had to take turns, and there was a bit of building work going on outside so it was a little difficult to relax with all the THUMP, THUMP, THUMP, THUMP, THUMPING.  Also, I was expecting us each to have our own treatment rooms but my friend and I shared a room and we had a therapist each.  The room itself was a bit hot and very cramped.  I didn’t like it not because I find it uncomfortable being naked in front of a woman (I used to attend a gym.) but because one of the therapists would talk and one of us would answer.  It just wasn’t right because I didn’t feel comfortable saying this or that for fear of interrupting a good experience for my friend.  As frustrating as it was, I did enjoy it.

We spent the rest of the day walking through London – we went to Piccadilly to do a spot of Christmas shopping at Fortnum & Mason only for me to discover that the prices for everything there was really too far out of my reach.  I got Helios a jar of marmalade, vowed never to spend £5 for a single bar of chocolate and we continued our adventure.

We made it to Covent Garden and had a very nice lunch with some wine.  While I was there I discovered a tea shop and, I’m proud to say, I got some delicious jasmine tea!

After that we walked back toWaterloo, said our goodbyes and went home.  What a lovely day!  We walked about 5 miles and I’ve got very small blisters on my baby toes but it was worth it!

This next bit contains explicit details about my doctor’s appointment.  Don’t say I didn’t warn you!  This morning I got up again at the usual time and drove to the local hospital for my appointment with the specialist.  I got a minion for the appointment but was very pleased with how thorough she was in examining me.  Firstly we talked about how my pain had been increasing over the past cycles.  She was surprised when I told her how my flow had been incredibly hard at certain times of my cycle – my birth control should eliminate heavy periods.  She’s given me some tablets to try to minimise the flooding.  I told her that sex itself wasn’t painful but that I got a backache afterwards.  She mentioned that she was a little concerned that I appear to have a history of smear tests that are less than perfect and, noting that I was exposed to DES, she wants to test me for scary viruses on my cervix.  Should anything be found, a small portion would be burned off or removed.  I’m good with that.  I cannot imagine long-term side effects from it and I’d probably benefit from the lack of worry after every smear…

She then decided that she wanted to see my internals so I hopped up on one of those tables and I notched up another doctor being in there.  I did tell them that I’d had more doctors in there than I’d had boyfriends.  The nurse chuckled as the doctor poked and prodded me.  I find the sonogram on a stick a bit uncomfortable but not agonising.  It’s easy to tolerate if you relax, lay back and think of England.  (!)

I was delighted by how she searched for things because she talked throughout the test.  I was told that my womb is leaning towards my bladder – something I never knew.  She was unable to find my right ovary – but said that at this point in my cycle it would be difficult to find.  So I said that she wouldn’t find my left one – I’d hidden it in my left shoe.  So when she found my left ovary I said that I’d have to try harder next time!  As she examined me, she told me what she was finding and why that’s abnormal.  In particular, my womb is very solid and didn’t move very well when pushed.  My left ovary was also solid and without movement when pushed so she presumed that the right one would have the same problem.  I can only surmise that my endometriosis is covering certain areas and leaving them sticky again.

So, as always, I have three options: 1) pain management with drugs.  She would like to put me on the mirena coil and I flatly refused.  She suggested the drug-version of a hysterectomy.  I’m curious but want to be sure that I won’t fall pregnant with it.  2) laparoscopic surgery to clear away any endometriosis found and 3) hysterectomy, including the removal of ovaries.  I have a follow-up appointment on 8th November where I can discuss my options and schedule a surgery if required.

For once, I’m reluctant to consider the hysterectomy option – not because I want children but because I like myself at the moment and don’t want to consider the personality changes that a hysterectomy may cause.  If I may be blunt, I don’t want to lose my sex-drive now that I’m finally in a happy and healthy relationship.  Oh sure, I’ll be given HRT and it will be mostly progesterone so my endometriosis won’t grow back but I don’t always do well on progesterone birth control pills so there’s no telling what havoc I could cause if I don’t have my ovaries.

The drug option would be good if I weren’t already content with my personality at the moment.  So it looks as though I’ll be requesting another laparoscopy.  I have plenty of time to think about it…

I did feel a little sore after my appointment but that’s passed now.  I’m off to bed soon.  Good night everyone.

Foxy

Daily News

I had a hard week this past week.  I had a head and chest cold from Saturday to, well now really.  I was well enough to go back to work on Wednesday though and struggled through the last three days.  It’s little wonder that I caught a cold: I’m still very up and down with my grief so it’s little wonder that I am a bit run-down.

While I was off work I was feeling terrible – mentally as well as physically – so I watched some films I’ve been meaning to see for some time but haven’t been in the right mood.  The Boy in the Striped Pyjamas was great and the ending nearly had me vomiting but the basic premise was wrong.  The camp commander’s family lived near enough to the camp that his son could see the camp outside his bedroom window.  The son presumes it’s a farm and, although he’s told not to, goes to visit.  And there lies my problem.  The Germans were far too efficient to allow a Jewish child to sit on his own for long and certainly wouldn’t allow an Arian child to sit and chat to an inmate.  I had to keep reminding myself of this fact afterwards in order not to dwell on it.

The other film I saw on Monday was Life is Beautiful.  Despite it being a holocaust film, it is life-affirming!  Completely unbelievable yet when the end comes, I found myself thinking “How’s he getting out of that?”

On Tuesday I saw Casablanca.  Have you ever seen it?  It’s more than just a love story.  Very very good.  Then I realised that I’d want to do myself in if I didn’t cheer up so then I saw a comedy which didn’t work well and was completely forgettable since I cannot remember which film I saw.  (!)

Wednesday at work was OK.  I really struggled in the morning but felt a bit stronger in the afternoon.  I was still coughing my way around the office but managed to stay the whole day.  Unfortunately we received an email saying that our free car parking was coming to an end as of the end of October.  That coupled with the fact that my friend who I’ve been carpooling with three days a week is retiring made me really start to panic about money.  I came home and started doing the numbers: should I get a train ticket or do the local Park and Ride?  The train is more reliable with winter coming but will mean that my feet will take a beating and I’m getting the same feet problems my mom has…   The Park and Ride costs about the same, I’ll walk almost as much but will mean that I can carry things more easily…  As you can see I’m still debating the pros and cons of my options…

Thursday was awful.  One of the partners from our head office came in, full of the joys of spring and said to me “Isn’t it a wonderful day?”  I looked at him and said “What’s so great about it?”  However, I really wanted to say “How do you think I’m going to afford to visit to my father’s grave next year now that my friend is retiring and you’ve taken away my free parking?” but managed to resist.  Biting your tongue is often a good option in the office.  He didn’t quite know what to say and left me alone.  His comment sent me into a foul mood on top of my coughing around the place.  I cried for a while in the toilet.  Lucky for me, my HR lady was in a meeting with him that morning and, when she emerged, she said that he truly hadn’t known that my dad had recently died.  So now I knew I had to brace myself: the guy isn’t a heartless bastard and I knew he would apologise.  Later that afternoon he apologised nicely and said that I must have thought him very insensitive.  Well, I said it’s OK, as you do, and that our HR lady had mentioned the conversation they’d had.  He was still being nice to me so I told him “Don’t be nice to me.”   I don’t know about you but I go to pieces when people are nice to me.  Well he laughed and said “Get back to work!  (pause)  No seriously…”  and he touched my arm and apologised again.  I went to pieces.  I HATE crying in the office.

That night Helios and I were meant to see the Ukulele Orchestra of Great Britain in concert but I asked him if we could skip it and cuddle on the couch instead.  I’ve seen DVDs of the band and would like to see them live (Their rendition of “Smells Like Teen Spirit” has to be heard to be believed!) but I just wasn’t up to it.  I don’t regret skipping it but hope to see them again at a point when I’m feeling better about life.

Luckily I had a dream where I was actually having fun on Thursday night – one of the symptoms of my polycystic ovaries is strange and vivid dreams.  I was at an office party where a number of other office parties were taking place.  (This happens a lot in the UK.)  As I’m organising my office Christmas Party this year, I think my brain was concentrating on that!  It was OK until I saw a popular girl from my high school.  When she turned up in my dream, all jet-lagged and unhappy, I went over to say hello.  Everyone in her office wanted to talk to me about UK/US differences and how I felt about living in the UK.  She didn’t talk to me much, which made me think that she was jealous which made me feel slightly superior.  I know it’s pathetic but after the day I had, just feeling competent was an achievement.  While I was chatting, the people from my office left so I went off to find them.  In another room there was a wave machine and I went surfing.  It was great fun and I woke up wondering if I should really be beating myself up as much as I do?

Friday at the office was easier: the head-honchos weren’t in and I got on with some filing.  I’m not looking forward to the next couple of weeks at work: my line manager (wonderful woman!) is on her fortnight break and I’ll be in charge of office admin.  I’ve been left plenty of notes and have been told to ring her if needs be.  Normally her going away is a little stressful but nothing I can’t handle.  I acknowledge I’m really not myself at the moment, however, and I hope I don’t struggle while she’s away.

Fingers crossed!

Foxy

Glamour

Thanks to Endometriosis Awareness Campaign for sharing this link.

I’m about to go over old history – you’ve been warned!

How is it that any of us have to wait for years and years for a diagnosis?  I don’t recall when my first symptoms of PCOS appeared but I’d say puberty because I occasionally get skin tags in my underarms and I remember first noticing that when I was shaving.

The symptoms for Endometriosis are easier to pinpoint.  I started my periods when I was 12 and I was in so much pain that I would vomit.  That was 28 years ago.  The doctor at the time said to my mother (who was terrified that I had something serious like appendicitis), “It’s just cramps.  She needs to take painkillers in order to get on top of the pain before she starts vomiting.”  How can any doctor believe that a kid vomiting from pain is normal??

I am still disgusted that some women reading this article in Glamour will accurately identify themselves as someone with PCOS or Endometriosis when doctors cannot.

How can we possibly hope for a cure when doctors are still unable to diagnose us??

Foxy