I’m in so much pain and feeling desperate

[Elaine777]

hello, I am reaching out as hoping someone can offer me some reassurance. I am in so much pain just now, I am feeling desperate and scared. Can someone reassure me that things get better?

I was diagnosed with endo in 2020, age 41, after decades of mysterious symptoms that no one was interested in. diagnosis was confirmed through a laparoscopy, and my symptoms and pain improved enormously after surgery but 6 months later it all started to come back. Fast forward 2 years and they now tell me I have chronic pain in my lower back and pelvic area, I have had no further tests, scans or surgery. I have inflammatory arthritis as well so have the complication of 2 painful conditions. No one seems very interested in finding out if ‘chronic pain’ is actually the case, I can’t get near the rheumatologist to see if arthritis could be involved, all the GP offers is more pain relief and a physio seemed unable to offer much advice or help. I’m normally very fit and active, or at least - I was.

My gynae (an endo specialist, who I could only see by going private) has recently put me on decapeptyl, I had my 1st injection about 8weeks ago and the endo flare was horrific (pain, bloating, IBS symptoms, etc). It settled a bit but in the last week the back pain and pelvic pain has been so bad I’ve been completely debilitated by it. I feel like I’m losing my whole life. Does this return of pain 8 weeks after decapeptyl mean it’s not endo causing the pain after all? Does anyone have any advice on how to cope with this?

I now worry something else is going on but no one is even considering that as I feel like I am being treated like a slightly hysterical woman, who just has a sore back. The Gp didn’t even examine me, over the phone he just prescribed more tramadol. He suggested I try gabapentin, I am reluctant to keep taking more and more potentially addictive medication when I feel like it strips me of my personality and ability to function, and I am still in pain. But it’s all affecting my mental health now. All I know is I can’t go on like this.

Sorry for the lengthy, unhappy post. Thanks to anyone who has read it, I think just saying this all is helpful.

[Chel91]

Was your previous surgery an excision? What areas were affected?

Personally, I would ask for another referral for endo specialist surgery and for a MRI. Just keep trying GP's until you get what you want. Let them know that the pain is life changing and preventing you from functioning. I'm sorry you are going through this. The wait and GP system is so frustrating. I don't know if paying privately is an option for you, but it is an option also.

[Elaine777 in reply to Chel91]

thank you so much for replying to me! I honestly don’t know whether it was an excision surgery, I should find out.

I have an appointment to see the GP next week so feel better armed to have a discussion with him about what I need and want. I really appreciate the advice 😊

[Petitechili]

I'm sorry to hear that you are also suffering. Its terrible that you struggle to get the gp to take it seriously. Unfortunately it's a very common occurrence. You definitely need a follow up with your gynaecologist. Sometimes they don't remove all of the endo. As someone who has been in constant pain for years and taking every prescription thrown at me, as well a as multiple surgeries, I'm not the same peron I was before this all kicked off. You are right to be hesitant to just accept pain relief. I hope you can get seen soon. X

[Elaine777 in reply to Petitechili]

thank you so much for getting back to me, I really appreciate the advice

I am sorry you’ve been in this pain for years, I hope you are now in a better place. I can relate to what you say, I don’t feel like I’m the same person I was before this all kicked off. Reading what everyone here says has been so reassuring as there is nothing quite as isolating and lonely as being in severe pain.

I’m seeing the GP soon so will make sure I go in to the appointment armed with a better idea of what I’m asking for.

Thanks again 😊

[BloomingMarvellous]

So sorry to hear of your pain and complications with chronic pain. Sadly common with endometriosis and adenomyosis. I found relief/management of pelvic pain and overall physical aches using specialist pelvic floor therapy. There are different sorts and physios with variable skill sets so you might want to explore here. You might want to look at hypopressives practionera here in the UK with endometriosis experience. I found help as well with specific supplements and altering my diet - particularly coming away from lactose. I found pain relief regimes ended with my gut and metabolism so screwed ontop of the pain I was in a real mess. It’s not 💯 but a lot better. I would also pursue scans ( look at Lindles posts for advice around this) to eliminate other reasons or complications that haven’t surfaced. Sometimes if you can find this privately it can get you in the right ball park for further help.

[Elaine777 in reply to BloomingMarvellous]

thanks for coming back to me, I really appreciate it.

I’ve heard of pelvic floor therapy and women’s health physio so I will look into whether there is something available nearby on that. I have never made any dietary changes, I’ve heard about it and have often wondered if i should try it - but tbh I’ve had a ‘complicated’ relationship with food and dieting over the years, but if it works I should give it a go. If nothing else it will help me have a greater sense of control over what is happening to me.

I see the GP soon so will go in armed with a better idea of what I want from the appointment. Thanks again for the support 😊

[BloomingMarvellous in reply to Elaine777]

Juggling food relationships that have been stressful with food restrictions/ dietary changes can be hugely challenging and triggering so my take has always been to have as wide ranging diet as you can, denial can be more damaging and stressful than the benefits of withdrawal so avoid extreme measures . Always balance need v cost of action against benefits overall. Ensuring you have back up and support if at all possible to help keep perspective. That said hormone imbalances can be a factor in driving some food /mental health challenges. 🤪 . Doing one challenge at a time also and really let that bed in before you possibly approach another or not ! Being kind is soooo essential. I like the lactase as a quick one. So for a start off : not all milk products are lactase dense as it’s the whey rather than the milk per se and most people can have up to 250 ml per day without it kicking off. Dr Google is helpful here. Plenty of folk use lactase enzyme supplements so they can go off piste when they go out or need a tub of ice cream 🍨 Removing it for 48hrs is enough time for it to clear the digestion and if it’s an issue then most folk notice at that point. No change ? It’s unlikely to be a current issue. Xxx

[BlueWhiteSand]

I’m so sorry you’re having such a difficult time at the moment. I can’t add much to what others have said, but a suggestion for when you see your GP is to type out a clear bullet-point summary of all your symptoms, how they’re affecting your life, and your immediate health goals (i.e. what you would ideally like out of the appointment). I’ve found doing this gives me confidence in remembering and discussing symptoms with GPs and specialists (especially if I’m feeling emotional or having a brain fog day, I can be like a deer in headlights trying to remember my gazillion symptoms!). And have a copy ready to give to the doc if they want it so they can add it to your file. I worried at first that it would get doctors’ backs up being given a kind of “handout”, but they’ve always seemed fine with it and the one today actually seemed overjoyed to have a summary she could use for my rheumatology referral! Hope this helps a bit x

[M1673402]

just to say - I had an awful time when I first went on Decapeptyl- it took about 12 weeks and time for the next one before I got any real relief! The flare can be so bad, hopefully it eases for you, honestly it has been life changing for me but it took a while to get there! Sending hugs, it is awful to be in so much pain I understand, definitely also keep pushing to see what else can be done, you can’t go on the way you are

[Stash7]

I'm so sorry you're going through this.

If it helps in anyway, I started on Gabapentin for sciatic-type pain which I now know is endo. I pair this with naproxen and paracetamol and it definitely takes the edge off things. It is certainly not a fix though. I am terrible with tablets - if there's a side effect then I am guaranteed to get them. Starting Gabapentin I felt a bit spaced out and tired but now I have no problems and I can't say I have any daily side effects. Everyone is different but I thought I'd pass on my experience with the tablet.

Unfortunately, it 'seems' like there's nothing my gynaecologist can do so I was referred to pain management. PM don't want to go down the route of injections, which I agree with, so there's not a lot else they can offer. I am now waiting for health psychology to try to come to terms with my life changing, deal with the grief of missing out on things etc. Once I have completed that, I will be referred to pain management to help with techniques to deal with pain, and to deal with the mental side of how pain affects my life - the guilt, letting work down etc. I know it's not going to fix things but it might be worth asking for a referral. Even if it just helps you process everything whilst you are still pushing for answers and treatment.

I really hope you get some answers. Sending lots of best wishes x