Any advice on what’s next?
Hi all
I’m new here and not great with technology so I apologize if this is in the wrong thread
I’m desperate for any sort of advice or what I can do next I won’t go into all details because it’s over 9 years I’ve been fighting this battle but it feels it’s coming to an end and I’m loosing!
I was diagnosed 3 years ago after fighting a very ignorant consultant for 7 years to have a look inside anyway she found a lot of endometriosis and a chocolate cyst which exploded whilst she was in there, she couldn’t remove all the endo because it had spread to a major blood vessel on the kidneys or something but everything went well! Since the op I haven’t recovered from pain it’s daily and its so bad some days I can’t walk, As of two years ago I’m under a new consultant who I have never met and had so many different treatments nothing has worked the last thing she gave me was Zalkya but it gave me migraine attacks and gp said to stop it immediately I’ve always suffered with migraine so knew it would happen but didn’t expect it as bad as it once. Two weeks ago I was watching tv and this stabbing shooting pains started in the pubic area, it was only getting worse and I started feeling sick so went to the loo, told my husband not to mute tv I didn’t want him hearing me being sick which was a mistake, within a min of being in bathroom the pain was worse than labor I was on the floor unable to move, shout and even breathing hurt I passed out! I came round and tried to call my hubby but he was downstairs and daughter couldn’t hear me so I thought I’d try and walk to bathroom door, another mistake I passed out again. Anyway this pain lasted a few hours with pain killers and hot water bottle then settled enough to sleep but the next 4 days were hell the pain was so intense and so debilitating I couldn’t even make a coffee, I heard from gp today and she said the consultant wants me to have implant in my arm, now consultant isn’t aware of what happened two weeks ago because her appointments get pushed back sometimes it’s 9 months since I spoke to her I’m not wanting more misery from side effects or migraines or more pain I just want sorting so I can live a normal ish life I’m 38 and fairly newly married, haven’t had a honeymoon because I just don’t feel upto it also I’ve been bleeding heavy since Nov last year. How do I approach this with consultant, I’m wanting a hysterectomy but will I need to go private for this? How can it be so difficult to have a normal life without pain and misery.
So sorry for the long post I just hoping this sounds similar to someone else’s experience and they can offer some insight into what I can do next, my gp doesn’t want to know in fact last time I went I was told they don’t have a magic wand and my consultant is impossible to get hold of so any advice would be great Thank you
First off, I want to say how sorry I am that you are going through this! That is an incredible amount to deal with. I'm sending you hugs!
It sounds to me like you're in the UK since you're using GP as your terminology? I am not as familiar with that system, but I wonder if you're able to find another doctor to work with. In a Google search, I was able to find https://theendometriosisclinic.com/...perhaps that is a starting point. Maybe that's not an option for you, but I thought I'd mention it. I also wonder if there is a nurse's line at your GP's office? In the US we are able to speak with or leave a message for a nurse who can address our immediate concerns with pain, bleeding, etc.
The things you mention, including the horrible pelvic pain, the prolonged bleeding, migraines, and that you've had endometriomas (chocolate cysts) suggest to me you have advanced endo and probably need to see someone who is an expert (I can't tell from your post if your consultant is supposed to be an expert in endo or not). Of course, I'm not a doctor, but I have stage 4 and some of these things are things I've experienced. I've had pain so bad I couldn't walk much as well as endometriomas that have ruptured.
I don't know if you're on Twitter, but sometimes I find that asking questions there can help, especially using the hashtag #endometriosis and #neisvoid (no end in sight void). If you aren't on Twitter, I'd be willing to ask a question for you about finding a good doc and see what comes back.
And please feel free to reach out anytime. ~Katrina, Endometriosis.net Advocate
Thank you so much for your reply, it means more than u will ever know this journey does feel very lonely and sometimes that’s the hardest part!
I am in the UK and unfortunately my gp surgery don’t offer the option of speaking to nurse on the telephone plus most nurse only deal with taking blood or changing dressings I even had to see a GP for coil removal yet I’ve seen on tv nurses do it.
I don’t use Twitter or any other social network to be honest I didn’t even think Twitter could be used to ask questions etc about the endometriosis so that’s cool I’ll check that out.
I made a promise to myself that this year is the year I get fixed I know I can’t continue living every single day in pain I only survive on codine and paracetamol and if I’m late taking it I’m in agony for hours but not to the point I’m laid up!
I’m worried about what this pain is doing to my mental state of mind long term and the lack of support from the NHS makes me feel very let down it’s been 3 years since I had the operation and nothing since just phone calls and let’s stick you on this medication since the bleeding and pain has progressed I would of thought they would want to see what’s happening in there but any form of surgery has been off the cards and I don’t know why, I don’t want anymore children I have a daughter 18 years old and the pregnancy was one of the hardest experiences of my life I’ve told them I don’t want anymore but because I’m 38 they don’t want to do hysterectomy I’m at a loss as what I can do next I don’t want more medication that will make me feel ill and not help with the pain but no one is listening I can’t afford to go private but family have said they will help with financing it but why should they use their money.
I’ll deffo have a peek at twitter see what I can find out I’m just totally rubbish with technology
Can I ask what treatment you have had please?
Thanks again lovelyYou're so welcome!
First, if you go on Twitter, I'd recommend using the hashtag #NEISvoid. It stands for No End in Sight Void, and it's a network of chronically ill and disabled people who answer questions through that hashtag. Also tag it with #endometriosis. Instagram is another good resource...you could connect with others in the UK who have endo. And if you find it too confusing, I'm happy to post on your behalf and see what I get back. There are probably Facebook groups in the UK that are good too if you happen to be on there.
I know someone in England that I interviewed for a story here and they might be willing to talk with you and give you ideas. Let me know if you'd like to me reach out to them.
I've had four surgeries, two ablation and two excision. I tried birth control and it wasn't a good fit for me. I was also on progesterone for a while and it was minimally helpful. I take NSAIDs for the pain and have tried CBD with mixed results. I have also done pelvic PT, which was good. Gentle yoga also helped...there is a lovely woman in England who does floor yoga (Dani Fagan, https://mytmsjourney.com) and I found her work quite beneficial, especially around the chronic pain aspect. Some diet changes helped too. I also have mast cell activation syndrome, so that creates some unique situations for me.
Happy to answer any more questions you have. Sending hugs. ~Katrina, Endometriosis.net Advocate
First let me say how sorry I am that you have had to deal with so much pain for so long. I can’t imagine how frustrating it is to not get much help except meds. It is interesting to me how different healthcare is in the US and UK. I really do hope you are able to get some help, sooner rather then Later. Big hugs!
Amber (endometriosis.net team moderator)
Oh my goodness I am so sorry that you have been through so much. It’s truly sad that it takes so long and so much trouble to get a diagnosis. And one that has basically no treatments. In 2018 I went to see my gyn and was going to ask for a hysterectomy bc I was just done with everything. Long story short she suggested an IUD I stead of my fourth surgery to remove the Endo. I was not aware that the IUD was being used to treat Endo. But o agreed and it has been a game changer. Obviously it’s not a cure and I’m not telling you that you should do as I did. But I would imagine that using the implant would be similar to having an IUD. I really hope you can get some help and can get to go on that honeymoon soon. If we can help in any way please reach out. Big hugs!
Amber (endometriosis.net team moderator)
Hi lovely
Thank you for your advice I’ve had the coil fitted for 3 years it was removed from the advice of the gyne she wasn’t happy I was still in pain and still bleeding even with the pill increased to two a day as well as the coil. The only meds that have worked was Zalkya but it gave me bad migraine attacks, I suffer with aura migraine and it brought some bad attacks and the optician said I shouldn’t take it anymore and I’m fearful the implant will cause the same reaction but once it’s in it’s in.
It’s such a shame we have to suffer like this and go through so much
I rang the consultant today and spoke to her secretary she said she will put me on a list to have a telephone call in clinic in the next few days so fingers crossed I’ll keep you updated x
