I am feeling very down today. I had an appointment with Endo specialist yesterday and was told I am on the highest priority for my laparoscopy in Wales to treat my frozen pelvis. As the top tier of patients waiting for this treatment is now so long(due to covid, etc) I will hopefully have my treatment or some of it in 2 to 3 years time! It was April 2019 when I first went to my GP telling them that I had what felt like endo pain starting again. In that time my health has got worse I am regularly off my part time job term time job in pain. I spend most of my time in bed .I do not have a life I have had to cut it back to nothing.It will be a seven year wait in pain if I have to wait 3 more years. I dont have the 20k for the surgery needed. My Beneneden health care did pay for a diagnostic MRI 20months ago but wont pay for the complex surgery I need.
The Doctor has told me to lose weight so I am operation ready, I am struggling to do so despite -drinking plenty of water, eating just eggs for breakfast, small salad for lunch and one homemade meal for dinner. I believe I am struggling because I am unable to walk very far, stand upright for long. I am in menopause and constantly exhausted. I take gabapentin, lustral, have hypothyroid, sleep apnea and no surprise suffer with depression. I have never been as heavy as I am now. I feel totally neglected and unsupported.
Please can anyone advise or support. My precious life is being wasted while I lie around in pain.
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KatDragon
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So sorry you’ve had to wait so long and still got to. That’s a crazy length of time.
If you are willing to travel outside of your area the GP can refer elsewhere. In the meantime they can provide far more support. Full blood test including thyroid , (med might not be doing enough) hormones, vit D, B12, etc. They need to check thyroid if you struggle with weight. But pain will be a huge reason as well. Referral to pain clinic if you haven’t had one might be useful. Also dietician if you want that route. You know your body.
Sleep apnoea doesn’t help the tiredness either. There is a good Facebook uk forum, they are great for support if you are struggling with this.
Thank you for taking the time to reply. I will see if I can get support from a Dietician and look at the sleep apnea group. I have a thyroid test once a year and they always tell me it is normal. I have been referred to the pain clinic and they prescribed gabapentin which I have been taking for a year with some improvement. I can sometimes get out of bed on this stuff!Your advice is appreciated.
It does depend on how extensive the test is, most just do a basic which doesn’t show the different aspects of thyroid levels. Other hormones would be a good indicator. Don’t be afraid to make suggestions of what you want. GP told me years ago you have to push to get stuff done these days. I don’t care what they think of me, my life is more important than that.
I found Duloxitine, along with Oramorph worked better than Amitriptyline or Pregabalin.
I’m checking forum most days if you ever need a chat. 🙂
Oh Kat, yours, mine and others on here are very similar stories and its heartbreaking reading them. Dontchya just hate it when they tell you to lose weight when you are hypothyroid? Endo seems to pile the weight on despite eating carefully. I am taking Metavive and Adrenavive for my thyroid and adrenal issues, and still the weight is creeping up. Doesn't help with spinal issues. Then added fatigue from endo and hypo, yeah....sorry tale of woe.
I haven't been told the full story of my endo as just heard it isn't cancer. I am not even elated, because I know the battle ahead with very little understanding, especially from people around me who think you just make this sheet up for giggles. Nope.
So I am going to try my own way, as if I was going to had the diagnosis been cancer.
Colon cleanse
Extended fast
Large doses of powdered vit C (tolerance test to see my needs)
And for the endo especially, DIM, Sulphoraphane, and Calcium D Glucarate (aromatase inhibitors, estrogen dominance clearers which endo is linked to)
But that is my personal decision after much research and exasperation. 46 and I am bedridden with pain and no energy. I have to do something but I will wait for all the NHS tests first. Its been six months to get to this point only because they thought the mass on endometrioma was Ca.
No wonder you have depression, I wouldn't wish this on my worst enemy, ok maybe a teeny bit because she was pure evil in her slander about me as I went through this. Others don't understand.
But on here they do, and is such a comfort I can't even tell you.
Thank you for responding, I appreciate you taking the time to reply. Yes people do make judgements and think we make things up. They have no idea how bad endo can be. I hope your own treatments work for you and you soon get the help you need.
I am so so sorry. This is so unfair for you, sending hugs. It's so wrong that your beneneden health care won't pay for the surgery.
I gained 4 stone in a year because of my hormonal imbalances and you're right it's so so hard to loose it because endo just piles on the pounds no matter how much you try to exercise and eat healthy - which is so difficult anyway when you feel sick and you're in excruciating pain!!
Don't pressure yourself to exercise because it is an impossible task when you can't stand for long.
Although if you're able, there are exercises you can do while sitting - the NHS actually has a website with videos that show a lot of modified movements that you can do if you're in a wheelchair.
On "lower" pain days I try do those ones because even though I don't have a mobility aid, I can't stand for long so have to sit which is basically the same thing.
In the meantime, if you're able then maybe try to register with another gp? Clearly yours is incompetent or they would realise that your symptoms are clearly showing underlying health issues. You deserve the support you need to live with this horrible condition until they can operate.
Also there is this fabulous site with advice on how to be active for people with chronic illnesses and disabilities. Even if it's just little movements or chores it's still being active. They have no judgement just support 😊
Thank you for your advice I will certainly look at the gentle exercise ideas. Thank you for your kind and supportive words. I was shocked that the Benenden policy I had been paying into for years-that I took out after my last lot of treatment for endo over 10 years ago on the NHS which left me suffering in pain for years(NHS England) and nearly cost me my job as I was off so frequently and for such lengths of time, would not fund the treatment I needed. The treatment I need is precluded by Benenden, you also cannot offer to pay for part and Benenden fund the other part. It is so annoying as if I had the 20k for private treatment I would have been treated over a year ago. If I had been well enough to maintain my career and work full time through out my life ,ironically I could probably have afforded to pay for my treatment but my years of suffering endo and Frozen pelvis have meant that I am not able to reach my economic potential.
That is so unfair what an absolute nightmare! When you pay into a policy like that you would expect to be given the care you need or what's the point? Unreal.
I think you have written my story. I have just been diagnosed with sleep apnea and have been struggling to lose weight despite trying all the diets. Even went on 800 calorie per day for 6 months and still didn't shift.
I have been waiting 3 years now with frozen pelvis, bladder endometriosis.
My advice to you is dont be so hard on yourself. For mental health I am seeing a psychologist who is helping me.
For movement I have a physio ( im in an autoimmune flare at the moment and my whole body is stiff and in pain on top of endo)
I have gone private for these as im sick of the NHS waiting lists.
I was referred to endocrinologist- wasnt notified of my appointment and got a letter to say I was discharged. Im livid with NHS at the moment. Just can't deal with it all. So totally empathise with you.
Just take 1 day at a time. Write to PALs and see if they can help move things along.
Hope this helps to let you know you are not alone. X 💜
Thank you for taking the time to reply. The NHS is infuriating, I often wonder if the staff are told to do things in a certain way in the hope that they can lose/ reduce patients. I am glad that you are getting the treatment you need. Unfortunately Wales does not have a PALS service. Your condition is exactly mine. I will look into Physio and psychological support that may be something my Benenden policy can fund. As you say- a day at a time is all we can do .I do find my CPAP has made me less sleepy than I used to be, I hope it works for you.
Yes , thank you for that I will contact CSIW and Benenden for physio and support. I really hope you get your CPAP machine soon. You will feel better, keep chasing them for it.
Sorry to hear of your pain. I too waited 7 years for an Endo operation in Wales and just recently I became so ill I was in and out of A and E, I lost all my work, the pain became so bad I could not even leave my house. Wales refused to even give me an urgent Gyn appointment even though I was very ill. They kept saying it was routine and I would need to wait 6 months even just to speak to someone. I didn’t even have one follow up appointment in Wales in 7 years. I reached out to the nurse begging for help and she ignored all my emails.
I moved back to England because there is no access to health care and no equality in healthcare for woman with Endometriosis in Wales. I ended up taking a loan and paying £15,000. Turns out I had stage 5 endometriosis everywhere. Deep lesions on my bowl, adhesions everywhere, extensive DIE all over my bladder, bowl, rectum. I could hardly even go to the toilet.
If Wales had bothered to give me a scan or MRI they would have seen the seriousness of my case. There is no duty of care in NHS Wales. They just don’t care. There’s no staff, no money and the worst part nobody is willing to be honest with waiting times and the telling you the correct treatment you need.
My honest advise is this is your body. NHS Wales lies. They also told me I was next on the list 7 years ago. You have no idea the how bad the Endo is until you have the laparoscopy. Don’t wait 7 years. Tell them you want to be transferred to another hospital (you have a right), or just pay yourself. You need to think about your mental health and work. There’s an even bigger price to pay just waiting.
Thank you for taking the time to reply. I am glad you have been able to get the treatment you need. I was lucky in that Benenden paid for my MRI and got me a diagnosis of Frozen Pelvis over 18months ago but I am now no further forward with treatment than I was in April 2019 despite my diagnosis of Frozen Pelvis and the impact it is having on my life and family. I am appalled that we are all just being left to suffer like this, it is so cruel when treatment is available. It is heart breaking to read how much we are all suffering.it should not be allowed.
Very sorry to hear of your pain. I can only suggest that you contact PALS tell them of your situation and ask them if the NHS in your area has an agreement for urgent procedures like yours to be done privately and paid for by the NHS. It maybe a good idea to ask your GP the same question. I met a girl at a private hospital who was waiting for MRI scan and she said she was referred by her GP to the private sector as her situation had become urgent. Wish you good luck🌹
Thank you for taking the time to reply it is appreciated.GP has expedited my treatment but it has not made any difference as post covid the waiting list for urgent treatment has gone from a handful to hundreds and we only have 2 experts in the whole of Wales. We do not have a PALS service in Wales.
You need to pay a private consultation with a doctor. It's going to cost you around 250£ but can be cheaper, too. And then, you'll go MUCH sooner on the list. Having to wait years for it is a pure joke!
I did see a private consultant and had a private MRI done through Benenden but when Benenden said that my Frozen Pelvis treatment was precluded from their policy and that we couldn't part pay or have part treatment I then felt I had no other choice but to go on the consultants NHS Wales waiting list as I had no other option. How do I go about doing what you suggest please? I will try anything to speed up my treatment and stop me from being in pain. We even told the consultant we were happy to contribute financially but unfortunately do not have the 20k to have the treatment done privately. Thanking you in anticipation for some guidance on how to do this.
I don't know about Wales but in the mainland of the UK, when you pay private from what I've been told, they can put you directly on the waiting list much earlier. Perhaps, you could try staying in a city outside of Wales and near a specialised hospital and go see a GP, there. Like renting a small room, there, so that you can show your contract to the private GP and you'd go much earlier you know on the waiting list (no need to stay for months there). You can arrange yourself with someone to transfer you any documents/letters.
I did exactly this, I paid privately 7 years ago thinking it would help (it was the same surgen on the NHS), it did nothing at all. I saw him twice and wasted £500!
Thank you for letting me know. It seems it does nothing then. Terrible waste of money if it doesn't work but if it did work I would have been happy to try it.
So heart breaking to read what you're going through 💔 although my situation is not so bad, but I know how frustrating its been waiting for next steps, next scan, next whatever seems to take a long time 😖
I don't want to say that I've given up on NHS and all that.. but quite honestly, I kind of have. I'm still on the waiting lists and what have you.. but decided to take things in my own hands and have already seen some good results.
I've recently read couple of books which have completely changed my view on endo and female health in general. Maybe you can check them out to see if there is something there for you to try to help yourself somehow whilst all the medical waiting lists take their time. The books that have helped me are:
🔸️'Endometriosis - a key to healing and fertility through nutrition" by Dr Dian Shepperson Mills & Dr Michael Vernon
🔸️'The Hormone Cure' by Dr Sara Gottfried
I also found a good amount of information on YouTube, such as:
Last link to Zoe Science and Nutrition is not endo specific, but once I understood the link between endometriosis, inflammation, IBS, leaky gut, gut microbiome etc then I've found Zoe Science and Nutrition podcasts super informative and helped me to make better decisions for my health 💚
I'm honestly seeing huge improvements in my pain levels already. It's going to be an interesting conversation with my gynaecologist once my appointment time arrives in million years time and I have already sorted a few problems which he said cannot be sorted any other way other than laparoscopy + mirena coil... 🙄
I wish you best of luck and hope you can find some help with all this suffering xx
Hi, sorry to hear about your pain issues and long wait for treatment. I would second the suggestion to see if you can be referred anywhere else with shorter waiting times.
I really would recommend you do not beat yourself up about the weight loss, unless they have actually said you cannot have the surgery without losing weight. Our bodies get used to a much lower calorie intake after a while and just retain weight (that’s what they’re designed to do!) I see someone else recommended reading Dian Shepperson Mills who has specialised in endo and nutrition. I have also seen the Heal Endo book recommended here a few times.
I would recommend focusing on healthy eating, to support your energy levels which are probably depleted by endo, medication, stress, other health issues, depression, . Gentle exercise when you can do it will help with your mood as well. Even getting outside can lift your mood,
I am onGabapentin and an antidepressant-nortryptyline in my case. They do help but do affect my energy levels. If you are in pain then it is worth going back to the Pain Clinic and asking to try something else. I asked for meds for a flare-up too - it was Tramadol, now diclofenac.
Have a look online for information about Chronic Pain and how it affects the body.
Make sure your GP is helping you get the right treatment for your other conditions too -it can be hard to advocate for yourself when you are feeling low and fatigued.
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