Feeling sorry for myself

[jennt0506]

Hi everyone,

I've joined as I'm feeling pretty sorry for myself endo-wise, and I'm looking for a community who understands the kind of pain endometriosis causes.

I was diagnosed at 18/19 with endometriosis after a few of the usual years of battle to get a firm diagnosis. I had a laparoscopy to diagnose and then treat the endometriosis I had at that time.

I'm now 24, and I haven't seen anyone about my endometriosis in years. I have never had a specific go-to doctor for my endometriosis, as the Consultant I previously had I left as soon as I had my laparoscopy as she wasn't a helpful or understanding individual. The only reason I succeeded in getting the surgery was my Father pushing for it, as we had gone private to get a diagnosis and he basically pushed his weight around to stop her trying to peddle off the next pill which wouldn't work, and ignoring the fact my endometriosis was causing some very significant issues in my life.

Fast forward to now, I came off the microgynon pill around a year and a half ago. It had stopped working for me, no longer masking symptoms or pain and causing very infrequent periods and spotting. I also am hypermobile, and it was feeding this, and unfortunately endometriosis and hypermobility play into one another perfectly.

The reason I'm writing this today is mainly to just talk, get some advice of what to do next, and to have a 'woe is me' moment. I'm not so good at them, and honestly I prefer to attempt to live as if I don't have a chronic illness (or two) a lot of the time. At this current time I'm going through one of the worst flare ups I have had in years. Yesterday I fainted, which was the first time since my laparoscopy, and today I've just been in agony. The last thing I want to think about is the knowledge that I need to go back to the doctors, but I know this is my next step.

Last time I went back to the doctors they wanted to put me back through all of the routine testing, which I just wasn't prepared to do - I don't see why I should have to 'rule out' other things or go through painful tests (like an internal ultrasound) when I am diagnosed and I'm well versed in the condition to know what the pain and the cause is. So, has anyone else experience that and how have they got around it? Simply, what is the best way to get straight to a specialist in endometriosis through the NHS?

Some coping mechanisms for flare ups would be really useful too. Currently I lie down, a lot, occassionally go for a walk if I can manage, cuddle my dogs, and take a look of cocademol or ibuprofen/paracetomel if I haven't got a prescription filled. I try to eat healthy, but during flare ups I find this much harder simply because the pain is often too great to stand and cook as I live alone, no one can do it for me, so I often end up picking at food or ordering a takeaway. I can't do yoga as stretching flares my hypermobility - which is a double pain as during times of endometriosis flare ups, I go through hypermobility flare ups too.

Sorry for the long post, and the general woes, just hoping to talk to a community who get it really. It can be hard being in your 20s with a chronic condition, among very healthy (but lovely!) friends who just don't quite get why you have to rearrange, yet again...

[Ilogn]

I really feel for you I'm also having one of those days. Feeling a bit defeated myself at the moment.

With regards to your question of finding an endo specialist on the NHS there's a couple of ways to go about it. There are bsge centres that are accredited in laparoscopy and treating endo. There are some on the NHS Google them and find one near to you. You'll still need a referral and you might find you have to teally push your gp for this as they're often not willing to refer out of area. Worse case scenario you'll need to find a new gp who is willing. (Fingers crossed it doesn't come to that).

Secondly have a look at the Nancy nook Facebook page request to join(only takes a second) and look at the list of international endo excision specialists. (There's a handful in the UK but some see NHS patients). What I didn't know is most general gynecologists will use ablation to remove endo that won't always.succed in removing it all. Cutting (excising) the endo has a higher rate of success. Obviously this is if you opt to have further surgery. But the doctors on this list should give you more than one treatment options.

Again this requires you to get the gp to refer you to them. Hope this helps.

X

[jennt0506 in reply to Ilogn]

Thank you for this. I hadn't heard about excision until recently and it makes sense, I had relief from my first surgery but I have never been symptom free. I'll definitely take a look.

I'm feeling a little better today, but not quite ready to fight yet x

[Ilogn in reply to jennt0506]

Yes a totally agree with you. It takes so much energy to fight for the correct treatment. and sometimes you just need to take a moment to breath and yeah feel a little sorry for yourself. It's rubbish we have to fight for treatment in the first place! Best of luck xx

[jennt0506 in reply to Ilogn]

Thank you so much xx

[seg86]

I have both endo and hypermobility, too! My hips give me the worst grief of all. You are not alone. And you are doing a great job of trying gentle exercise when you can.

I can’t give any suggestions re: NHS - I had a terrible time, so much so my husband came to live in Australia and I moved back (Australia is my country of birth) so I could pursue different approaches.

I do find that when things are bad, gentle stretching in the most achey joints can be really reviving.

Also, I use cold and hot compresses, one after the other and take curcumin supplements everyday, plus magnesium for the muscle pain.

Foam roller and massage balls are wonderful too as you can control the depth of massage into your most achey joints. I have to be talked into it because I feel so rubbish, but I always get a fresh sense of relief after gentle massage and exercise.

Good luck and keep up your strength.

[jennt0506 in reply to seg86]

I spent a year in Australia and I would go back there in a heartbeat. I had a very intense flare up of both conditions when there, and wasn't formally diagnosed with hypermobility at the time - I was diagnosed within a few weeks in Oz. I just found the healthcare there so much more about listening and less about telling. Sadly I was just visiting on a working holiday visa.

It's usually my back which gives me grief but for the last few weeks it has been my hips. I have this thing where sometimes I get up and my right hip doesn't move, and kind of jars, and I end up feeling like I have cramp in my hip. It can take 5, sometimes even 10 minutes, for me to be able to put weight and walk properly on that side. It's intensely embarrassing in public and I've found myself just desperately forcing my hip to take the weight and then paying for it, which is silly.

I also take magnesium but hadn't considered curcumin so I'll take a look at that, thank you.

I have a foam roller and it's a god send. I tried a tennis ball for a while but it was too harsh - the build up in my lower back, glutes and hips was too much and the whole thing was agony. I have a Personal Trainer who I used to get massages with, and it was my favourite part of my month, but I haven't been able to afford her for a little while and I can definitely see my health has declined as a result. I'll take a look at some massage balls, I find gentle stretching often makes me worse in the long run with hypermobility but massage is so relieving and relaxing for both conditions I think.

Thank you so much for the tips, and kind words. It can be so difficult to know what's right when you have not one but two poorly understood conditions. I was in Scotland for a week last week and spent three days doing hikes and feeling on top of the world, and now I'm relatively convinced I did too much and was too active and set myself off. That's frustrating, because I'd rather do that and enjoy myself and then suffer than I would not! x