Endometriosis Update – Jan 16

I just wanted to give another update since my last post about Endometriosis in September. Back then I had a lot going through my mind, a lot of “what if’s?” and “when’s?” as I knew the Endometriosis wouldn’t be curable unless a Hysterectomy happened and that wasn’t even offered, its a last resort!

Now everything has been pretty much laid out for me and my questions have been answered.

As things stood since my last post, I was 4 months post operative following a laparoscopy investigation and some scar tissue was burnt away, my symptoms had been a lot better up until a couple of days earlier to my post. The pain had made a come back but I was trying to be hopeful that it would only be a one off, as Sam and I were hoping to have another child. Sadly things didn’t quite stay that simple…

Since September…

After that first bout of pain things gradually got worse and worse. At first I was hopeful to manage the condition with medication and it seemed to be working, until one evening early in December. The first major attack of pain was late in the evening, a normal evening, relaxing after a busy day and within minutes I was in utter agony, I’d like to be really honest and say the pain was worse that child birth and it was affecting every part of my abdomen, bowel and bladder. It just took me back to the first attack of pain on Christmas Day 2014! It left me utterly shaken and worried but eventually a small cocktail of pain relief fixed me up and I got some sleep. I remember being amazed at just how quick this pain had come on and left me floored.

Later that night/early the next morning it happened again, this time the pain woke me up and was much more extreme than what I’d suffered earlier on. Eventually I just couldn’t handle it, the pain killers weren’t touching it and I had to phone for a paramedic. Now don’t get me wrong, the NHS are great and we get our services for free but there wasn’t a lot he could do for me without phoning for an ambulance as this was just way out of his league apart from discuss the symptoms and take readings etc. In the end he called for an ambulance for me and they whisked me over to hospital for investigation. An utter waste of the paramedics time and not very helpful at getting me the help I needed.

On route to hospital (a hour after calling for help) the pain relief I’d earlier taken finally took effect, I didn’t want to accept morphine as it tends to make me sick and I didn’t need to add problems to my already embarrassing equation (not great being a woman surrounded by men, at 3 am!). Eventually I reached hospital where I was treated with absolute utter disgrace. The hospital staff just left me sat in the waiting area in pain and you have to believe me here but with this pain, all I need to do it lie down, sitting is completely out of the equation! Eventually a triage nurse came to speak with me, wrote down all my notes, symptoms and completely ignoring that I told her I had endometriosis tried then fobbing me off with a water infection!!

She then had a doctor, who I hadn’t seen nor spoken to, prescribe me max strength antibiotics and sent me home… still in pain!

By this point it was now 6am, I’d given up and was exhausted. I called my family to come and collect me.

Later that day, I called my GP told her all that happened and that I knew I didn’t have a water infection. Asking for a sample which I was still happy to provide she later confirmed that there was no infection what so ever and I didn’t need the medication – Good job I didn’t start the course.

Since this attack I had another 4 in the space of a couple of days (1 resulting in another hospital trip), I was mid cycle at this point and I knew I just wouldn’t be able to cope should I be suffering still in the next fortnight. This left me utterly dreading my period and future cycles. I was feeling completely deflated, knowing that this was most likely the way my life was to go.

As it was early December at the time of all this happening, I knew I was due a period within the next week or so. This gave me time to reflect and talk with Sam.

What Next…

After my surgery in May we’d decided to try for another child and my gynaecologist confirmed now would be better to go ahead with our plans rather than waiting as we know Endometriosis wasn’t curable so it was only a matter of time before symptoms returned thus rendering me with fertility issues. But given the symptoms I’d just had I knew things were rapidly going in a direction I could not control.

I had to make the symptoms stop or at least reduce to a more manageable level.

I had to start contraceptives as these will reduce blood flow during a period but also stop ovulation. This sadly meant no more children, no more plans for extending our family but I would be pain free.

Now…

I have now been back on the contraceptive pill for 6 weeks, enough time for the medication to take effect over my body and I feel ALOT better! The pains although have not completely gone, they are much much more manageable and I am very happy with that. I am back to carrying out my normal day to day life and managing my symptoms without any cocktail of painkillers.

Emotionally I’m not so pleased, I am broody, very broody. We weren’t finished building our family, we wanted that one last child to complete our family, but now it looks like we are finished. I can’t compete with my emotions and that pain, that pain was horrendous and has somewhat left me and Sam scared for life.

Hopefully the contraceptives will keep my symptoms at bay, hopefully I can continue my life happily without any further problems from the Endometriosis. Time will tell.

 

Thank you for reading.

 

 

4 Comments

  1. Jenna Keller

    18th January 2016 at 7:24 pm

    I also have endometriosis, which was discovered after a large cyst was removed from my ovary 3 years ago. I had already had one child and had just suffered a miscarriage, but had no idea I had it! I’ve never had any pain with it and I had a scan recently and my ovaries and uterus were clear of cysts so think I must be lucky not to have symptoms. I feel for you, sounds awful! I hope you can have another baby, I was worried I wouldn’t be able to after endometriosis was discovered but soon fell pregnant and had a daughter. Good luck to you x

  2. Sarah Doyle - let them be small

    17th January 2016 at 9:34 pm

    Oh gosh, how awful this sounds. Scary how quickly the pain gripped you – must have been terrifying for all concerned.
    I hope the pains stays at bay xxx

    1. Rebecca Bodkin

      17th January 2016 at 10:08 pm

      It really was, but I am glad its now gone away again. I’m not overly convinced the pill will keep it at bay forever but a breather for now whilst I wait to see my consultant again will be fine for now. Thank you for commenting x

      1. Sarah Doyle - let them be small

        19th January 2016 at 7:35 pm

        yes, some interim management will at least give you some respite x

Reading Your Comments Really Makes My Day...

This site uses Akismet to reduce spam. Learn how your comment data is processed.