It feels like I haven't blogged about Endometriosis in a very, very long time. Too long in fact, because right now I seem to be having major issues with it all again.

I think the last time I posted properly about it was way back in 2010, before I fell pregnant. I commented on it once or twice during pregnancy and then again last year, but to be honest I have been not-so-blissfully unaware of its impact on my life for quite some time. And that's not to say it hasn't been having an impact, but rather other things have distracted my attention from it.

But right now I seem to be living in hell and I'm beginning to think it may be connected to the Endo again (rather than, as I have been woefully saying, lingering affects from being so sick during my pregnancy).

Perhaps this sounds like I am being a bit of a drama queen, but bear with me…

I started suffering from nausea for 2 weeks in every month from the time Little Man was 3 months old. I saw a gynaecologist about this and we discussed my symptoms. He told me that as I had no pain and only nausea it couldn't possibly be the Endo, even though nausea is a very typical hormonal symptom for me. That was summer 2012.

By summer 2013 I was starting to get those niggling pains… the ache around the ovary, the cramping around the womb, the stabby pains in places you do not want to mention. They weren't regular but the fact that they came (along with spotting) whenever I did anything strenuous like scrubbing the kitchen floor or having the odd romantic evening with my husband, made me think things were ramping up a level.

What I failed to remember though was that when I had my last laparoscopy in 2009 I wasn't in huge amounts of pain. I had pain, but not unbearably so – it was all the other symptoms that got me. The nausea, the exhaustion, the random pains that had no pattern. I fell into the ridiculous notion that without pain it couldn't be the Endo (as prior to my first laparoscopy in 2005 pain was the major symptom I had), but I have always known pain isn't a direct indicator of the severity of Endometriosis and as I wasn't having periods thanks to the Mirena I wasn't having that same severity I had suffered from before. I knew this in 2009, which was why I pushed for the laparoscopy when they discovered stage 3 Endo which included my uterus being attached to my bowel. No wonder I felt awful!

But for some reason I did not make these same connections last year. I think I was so concerned with raising awareness of Hyperemesis Gravidarum as that was still so fresh in my mind, that I just assumed the dietary issues I was having were left over from that (after all, even my GP said all that dry heaving could have caused a hiatus hernia!) And then, of course, I was so worried about TJ's symptoms that I never really stopped to consider how bad mine were getting, nor how quickly they were progressing…

But here I am, in 2014, in a very familiar place. I'm exhausted, I am in discomfort, I am sick, and I am losing weight. All of these are such telling signs that something is wrong and I cannot believe I have missed them until they got so bad I had no choice but to notice them.

I guess I just always had something else to blame. In September I had to take two courses of antibiotics which severely upset my stomach – so I thought it was that. In October I started a new job so I thought the stress of that was making me sick. In November I went to a conference and I thought the change in routine upset my system. In December I had the most horrific "virus" and yet now I don't think it was a virus at all… I am starting to worry it was connected to adhesions around my bowel.

In January I had yet another virus, and this time TJ had it too so I just thought it was that lingering on a bit too long. But over the course of December and January I lost a stone in weight and I have yet to put it on. The only other times I have been this small in my adult life has been when I was very sick with the Endo or very sick with Hyperemesis!

Since January I have felt sick most days. For the past few weeks I feel sick without fail 30-60 minutes after I eat. Without fail! That makes eating very challenging to say the least. No wonder I can't seem to put the weight back on.

I am taking medication for the sickness, medication for reflux, and medication for IBS and I am still this sick. It is getting to the point now where I don't know how I am continuing to cope.

I don't know how I am doing it, but I do know why I am…

1. I have no choice

2. I don't know any different

3. I will not be beaten!

 

But that doesn't change the fact that I am really struggling and I need to get on top of these symptoms soon. I am lucky that I now work from home so can at least work around feeling poorly (I have made several phonecalls from bed!) That goes a long way towards helping me cope but the symptoms are still extremely troublesome.

So my difficulty now lies in the way forward. I have an appointment to see a gastroenterologist in April but I am unsure whether I need to see a gynaecologist instead (or as well as). I don't know who deals with these things – I think the Endo is to blame because I have some very telling signs, and yet it is severely affecting my digestive system which has not been great ever since my diagnosis of Endo, so perhaps I need to see both. 

All I know is that I can't keep going on like this. It is for this very reason that we know we can never have another child. For us it is not the Hyperemesis that stops us doing it all again but rather my health outside of pregnancy too. We were so lucky to fall pregnant naturally and have Little Man but we can't do it again… it takes all my energy just to give him a good life, I couldn't split myself between two children. And it hurts me to say that but it is true.

I think I'm heading towards surgery at some point in the near future but I don't know what kind and that is scary too. And this is why I need to start blogging about it again… I need a place to share these feelings, both for myself and for all those women (1 in 10!) who experience the hell of Endometriosis. If I can ignore my own symptoms and doubt myself after all I've been through and all I know about it, what chance have I got of getting anyone else to recognise them and fight for better treatment? 

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29 thoughts on “Let’s Talk About Women’s Health: Endometriosis and Me”

  1. Sorry to hear this, it does sound horrendous. I know how difficult irbid to look after anyone when you’re feeling terrible, and I’ve only had to do it the odd day here and there. I hope you find support from specialists who can help treat you properly xx

  2. You poor thing 🙁 Endo is horrid, and the gastro symptoms debilitating. We have a gastrointestinal disease and probable connective tissue disorder and sometimes just getting through the day is hard enough. My close friend here is the first documented case of endo 100% outside the uterus. Being “interesting’ is not always good though… Hope they can help you and things improve soon x

  3. Oh gosh this is awful. Poor you 🙁 I have friends with Endo – as you say, it is relatively common but I’ve never heard of it to this extent! Perhaps surgery is the best treatment for you, either way I do hope you get it sorted, it must be so debilitating.

  4. What an honest post and thank you for writing it. I’m nearly in tears as I’m currently going through a similar situation, but not Endo (at least haven’t been diagnosed with it) but with severe menstrual cramps, going to see a consultant next week after a GP finally took me seriously after I passed out on Monday because of the pain. This was despite being on very strong painkillers and anti-inflammatorys
    I wish women’s reproductive health and hormones were taken more seriously and more help and support was given. It completely impacts your life and at one point when I was much younger my family doctor just said to me ‘It’s something you’re just going to have to live with.’ And I did for a while but had to take lots of days off school and later on off work.
    I have been lucky enough to have a child, that’s another story! But I’m not sure if I’ll be able to have any more, as the increased pain when I’m not on any contraceptive is unbearable.
    Sorry to have gone on a bit in your comments and I hope you don’t mind me commenting, I hope you get the best treatment and support that is right for you, so you can get on with your life and enjoy your family.

  5. I have a friend with Endo and she suffers terribly. I wish you well (as can be) and hope your surgery goes well. Thank you for bringing the awareness of Endo through your blog. Reading through, I wonder if I have it (or at the very least something going on with my ovaries etc) and am booking to go to the doctors as I am in agony each month – more so as I’ve gotten older
    x

  6. Why is it as women, we never notice we are really sick until it gets to a point we have to take action. I hope you figure all this out and don’t have to have the surgery. Good luck to you!

  7. I had endometriosis since I was 16. I had treatment twice until I had a hysterectomy due to cancer. The treatment was not bad at all and made my symptoms much more bearable. If I was you I would get on the phone and get an appointment to discuss it

  8. Whether the problem is gynaecological or gastric you need to go to your GP and explain the severity of your symptoms and your concerns so that your symptoms are registered and recorded. Don’t leave it until your April appointment. Although it is probably the last thing you want to do when you feel so ill push for more help. I hope you get the medical assistance that you need as in my experience the NHS are a terrible and neglectful disappointment xxx

  9. Sorry to hear it’s back to the Bad Old Days, for want of a better expression! I know exactly what you mean about finding other excuses, reasons and what-not for how you’re feeling: I’ve been there with various ailments.
    Like some of the other comments, though, you need to fight for your treatment, care etc.. Just because YOU don’t think you’re entitled to something, possibly because you feel weak asking for it or whatever, you MUST. There might be plenty of people who’re unentitled to things who get them, but there are also plenty of more-than-deserving people who just don’t bother. You need to cause trouble, shout and scream and get it sorted: not just for you, but for your family (immediate household and otherwise) to get the support you deserve. It might not be great support, it might not even be what you want, but it’ll be better than nothing, better than being ignored, better than being stuck at the bottom of the pile. The loudest get the best, I’ve found; and as a loud person who doesn’t keep quiet about computer problems at work, I’ve developed a bit of a reputation with the IT department. Not a bad one, mind: just as someone who won’t take no damn nonsense, and who’s got some ideas of what I’m talking about! I know it’s not really you’re style, but try it and see if it works 🙂

  10. Wow I’m sorry you are suffering so much with it 🙁 When I worked on the gynae ward I was shocked how brutal it can be! I definitely think you should see a gynaecologist as well – and hopefully they will be able to come up with a plan for the future that actually will help you!

  11. Sorry to hear about your disease, this sounds awful. You are so brave that you re fighting with this problem but other side I am happy for you that you fall pregnant naturally. I hope you will have relief from this disease and live a happy and long life with your family. Prayers for you and your family.

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