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The Post-Op Follow Up

So, the follow up… I don’t have many fibroids inside the uterus but the walls of the uterus are so full of fibroid material that it’s now between 2x and 3x it’s normal size. I also have fibroids the uterus – attached. I’m very disappointed because I had hoped that the cysts would be easily removed. The doctor has said I realistically have two choices: I can live with it or I can have a hysterectomy. Neither choice is very appealing.

I have another follow up at the hospital on 30th April to discuss all the possible side effects and to help me finally make a decision. I’ve started talking to Helios about the choices and he is very supportive – with whatever I decide.

These are the questions I have for my next appointment:

  1. Will I still be able to have an orgasm after the hysterectomy?
  1. My husband is very well endowed.  I don’t have problems accommodating him now.  Will I after the hysterectomy?
  1. Do I have to worry about vaginal prolapse?
  1. Where my organs will end up after the removal of my uterus?
  1. What is the best way to eliminate risk of ectopic pregnancy?  Will the fallopian tubes be removed?
  1. Would it be a good idea to continue my birth control tablets – bearing in mind I have PCOS and the recent surgery found no active endometriosis lesions?

I have to ask you, is there anything else I need to be aware of?  What issues have you encountered?  Any input that you may have will be gratefully appreciated!

Foxy

Second Guessing and Painted into a Corner

Because I know what the doctors found when they opened me up on 2nd March, I’ve looked up the usual treatments for fibroids, I have a rough idea of what the doctors are going to say to me next week at my follow up.  I can’t really help myself – I like to work out all the permutations ahead of time so that I can get the most out of every doctor’s appointment.  I think my choices are:

1)      Cutting off the blood supply to the cysts.  This involves a procedure where they insert a catheter into my leg and navigate around to the womb where the blood supply to certain parts are burnt off.  This is a good option only if the fibroids are in strategic locations.  I may not be a good candidate for this due to my reliance on the birth control pill – so the cysts will probably just come back.

2)      Ultrasound can be used to attack the cysts  but this treatment is only seen as partially effective – which I’m really not interested in.

3)      It’s rarely mentioned on the websites but hormone therapy may be an option.  I will need to have a very low oestrogen level (which I thought I had already thanks to my PCOS).  This may involve the drug-related hysterectomy or it may involve something else and will take several months.

4)      Hysterectomy.  This is the one that I’m dreading and thinking it may be my best option all at once.  I’m tempted to ask them how they think it would work if they removed my womb but left my ovaries and then if I carried on taking my birth control pills (because at the moment I seem to have no active endometriosis).  The plusses for this option are i) I’ll never have a period again and ii) theoretically my hormones won’t change and so I won’t change “in myself” (and by this I mean that I won’t necessarily mentally change).

The down sides of hysterectomy include my concern as to how I will feel about myself after a hysterectomy.  This has nothing to do with me ever potentially having children.  I am more concerned with feeling womanly and my physical relationship with my husband.  I’m probably going to sound rather base here but, frankly, I really like sex with my husband.  If I let them remove my womb, I may never have an orgasm again. Would you want to take that chance if you’re having amazing sex at home?  On the other hand, I’ve been having pain immediately after intimacy for a number of months now and it’s only a matter of time that my body starts to associate intimacy with pain so I have to do something!

Another down side of a hysterectomy is that I’ll need more time off work.  I’ve used up my sick allocation for the year so I’ll be given Statutory Sick Pay for the time that I’m out of the office.  SSP isn’t a lot of money – certainly not enough to live on, but I can save up for the event and hope I can get back to work within just a couple of weeks.  Money is not a critical issue (thanks to a number factors that I won’t go into here) but it’s something that I need to consider.

Having said all that, the hysterectomy may take care of my fibroids but a hysterectomy is not a cure for endometriosis.  OK, at the moment I don’t have active endo lesions but there is a chance that my endo will flare up again and consequently my pain will not diminish after a hysterectomy.  Can you imagine how I’d feel after that? I think I’d demand some anti-depressants, painkillers and Lord-knows-what-else after that!

I suppose what I really want is some indication that one direction is the best thing for me (even if it leaves me with a little, manageable pain).  At the moment I feel like I’m painted into a corner.  No option looks better than the others.  No option leaves me with the guarantee of a  pain-free existence.  It reminds me of the choice of the next leading politician – there is no good choice, just deciding the lesser of all the evils.

If I have my Buddhist hat on, I am reminded that suffering is a mandatory part of living – the choice we have is to endure, or to not endure what pain we have.  If I have my Christian hat on I am reminded in the Lord’s Prayer that it’s “Thy will be done,” not “My will be done”.  So no matter what happens, it  is my lot in life to be trapped in this body.  I have no one to sue for life not living up to the advertisement.  The fact of the matter is that I’m here and this is the hand I’ve been dealt.

Foxy

Grateful for Endometriosis Awareness Month

As this is the last day of Endometriosis Awareness Month, I wanted to take a few moments to reflect:

  1. My surgery on 2nd March found no active Endometriosis.  OK, I have to say that I’m unhappy with a new diagnosis but at least I know what the problem is and am better prepared for another fight.
  2. My surgery on 2nd March gave me the perfect excuse to talk about Endometriosis with people with whom I wouldn’t normally talk about my health.  I was wary about mentioning my health at the office but felt I had no choice.  I wanted to turn my negative into a positive and I think I managed that.  I expect some people may treat me differently as a result of my discussions but, as I was displaying symptoms at the office, I felt that people would start to treat me differently negatively if I didn’t.   At least this way I am  in control of the information and they know I’m doing everything I can to feel healthy.
  3. Just before my surgery, I had my annual appraisal.  I was told that they were very impressed with my efforts over the last year.  Since then I’ve been told to expect a significant pay rise and a bonus.  I cannot discuss this at work because, due to economic climate, not everyone will be given a pay rise.  After the tough year I’ve had at the office, I feel I deserved it and am delighted that they recognise and value my efforts.
  4. Furthermore at work, I’ve been well looked-after.  I merely have to ask and various people have gone out of their way to lift and carry things for me.  I feel supported.  I am in a nurturing environment.  Oh sure, I work hard but after all the places I’ve been, it’s wonderful to feel appreciated.
  5. I have the constant and wonderful support of my husband.  He allows me to be who I am without trying to change me.  He supports every decision I make.  He never makes me feel guilty when I’m not feeling 100% and is great at helping when I need it.  I am stronger with him.

Endosisters

If you’d like to join a forum to discuss Endometriosis with others like us, go to:

You’ll find some great people who know how hard it can be.

Foxy

Infection

After a rough weekend full of excess sleeping and stomach soreness, I went to the GP yesterday.  I had managed to work myself up enough emotionally that I was in tears by the time I sat in the chair beside her.  I was asked to hop up onto the table and the GP had a feel of my belly (sorry about the cold hands).  Her touching me was uncomfortable – even afterwards it was as if I could still feel where her hands were stirring up things in my abdomen that are best left alone.  The worst bit of the doctor’s visit was her having a look at my stitches.  OUCH!  Even she was surprised that I am still bruised by my belly button.

Wishing you pain-free days

Foxy

Endometriosis Awareness Month – Raising Awareness

I have found it difficult to discuss my health issues at work.  It’s a tricky one because I’m afraid that health disclosures will effect how I’m perceived in my job.  I’d hate to be discriminated against simply because I have illnesses.  I don’t want to be tarred with the stigma of having chronic illnesses in case it effects how I’m perceived and treated.  I cannot afford to lose my job.  In order to avoid this I generally don’t discuss my health issues with people at work.

However, I have been at this office since January 2010 and, I believe, have proved that I’m a reliable and determined member of staff.  I have completed a number of projects in good time and have enjoyed some new responsibilities thrown at me.

So when I arrived at work one morning in November I told my line manager and partner that I would need surgery, I was determined that I would get the “endometriosis” word out.  My friends from the office haven’t asked me much about the condition yet but I have made it perfectly clear that I’m available for questions.  I expect there will be more questions upon my return to work.  Well, I hope there will be.

Foxy

March is Endometriosis Awareness Month

Please don’t forget that I keep having these fantastic laparoscopy surgeries because I have endometriosis.  I’ve said it before and I’ll say it again, endometriosis is a chronic illness.  There is no cure.  The surgeries I have and tablets I take are mere pain management tools.  Even if I have a hysterectomy, it will be a mere pain management technique (and a drastic one that I cannot quite stomach yet)!

Foxy