This is not a question, and sorry very long so don’t feel you need to read, just feel I need to connect with those who understand. I was due to have a total hysterectomy, bowel resection and excision of any endo on Monday at a BSGE centre and have been cancelled last minute due to the junior doctors strike. First I would like to say that I am totally on the doctors side as many of us on this forum are well aware of the nhs decline and we need good people who are paid well for their skills and expertise. However this is going to be my 13th abdominal op, 15th op in total if you add in 3 ops due to breast cancer! I’m post menopause and still have uncontrollable rapid endo growth which is very rare, keep getting abdominal infections from it and am in constant high levels of pain which when really bad isn’t touched even with strong opiates. I’m just at the end of another round of antibiotics and my stomach constantly now looks like I’m about to give birth, so tight and uncomfortable. My bowel had also stopped working but now taking powders from gp that is just about moving it along but this is also excruciating.
I’ve had symptoms since I started my periods at the age of 12 and have had to accept living life limited since then. I was diagnosed with stage 4 in my early 20’s. I’m now 56 and have been battling the system for years. For the last 3 years I’ve been mostly house and bed bound due to the endo and also developing fibromyalgia.
I’m just so worn out as every last bit of my depleted energy was heading for hope on Monday for some improvements even though I’m terrified of such a big op. Now I’ve got to find the strength to hold on until I get a new date. I’ve been on the urgent waiting list since last May as I’m at high risk of bowel obstruction and as I’m post menopausal the endo cannot be controlled and if left too long will likely turn malignant in the future. I also have andenomyomas in the uterus as a result of andenomyosis. Sorry this is so long but after struggling for 44 years with this, not being able to have my family I so desperately wanted and not being able to work in my part time teaching job for the last 12 years which have included battling 2 bouts of abdominal sepsis from endo infections. I despair for all the people on this forum, especially the younger ones, that are still battling to be heard as if treated earlier so much damage can be avoided. I’ve cost the nhs so much now but have been left with so much damage and scarring from repeated surgeries by general gynaecologists that just burnt the top off endo and removed repeated recurrent endometriomas. This should never have happened. Please all of you find the strength to keep fighting for yourselves, I know it’s hard but you must be heard as this cannot go on for all of you and those coming after us. There is so much potential lost from all who have to live half lives due to this horrendous disease. I’m hoping once I’ve got through the next big op that I can use my voice and story somehow to educate people and raise awareness so something positive can come from my life long experience of living with this. My gp of years has always been fantastic and alway believed me, she told me recently that over the years she has learnt so much about endo from me and its affects on a persons life. I like many of you spend hours researching medical papers on the subject. My gp is a rare treasure who I am so grateful for as she has always backed me all the way and tried to speed things up where she can.
That’s it, I had better shut up now but feel a little better for getting it out, just off to take some more oral morph. But please fight for yourselves lovely people. We are the only ones who know how devastating this is to all aspects of life and our combined strength can make a difference, I’m sure. Sometimes when we feel our weakest and alone we are actually at our strongest! Although I don’t know you all when I read your posts my heart goes out to you and I am rooting and thinking of you and look out for updates on how you are all doing and delight when I see someone post they are doing better and being heard.
All my kind regards and hope for you all. Poppy ☀️
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Your post makes me cry for all youve been through and are going through. It must be so hard having such an important surgery cancelled. I hope and pray that the timing of this operation will prove to be really good for you.
One thing I would suggest, if you haven't done so already, is to pay privately to see a nutritionist. The NHS are brilliant at many things, but there is still a ways to go for it to become holistic in its approach. Some of what you describe makes me wonder if you are living with candida/ gut dysbiosis, which can be treated, although the NHS doesn't seem to acknowledge it so much. I did a special anti candida diet for years, took anti fungals for a while, did a parasite cleanse and took and still take very good probiotics, all of which alleviated a whole load of symptoms, although I still had the endo pain. Although, given all that I've now learned I think I might well go gluten free soon. Apparently it can take up to 12 months, but many find going gluten free really helps with the pain. Deep diaphragm breathing can help too. And my tens machine is something I have highly valued.
Sorry if you've already been through all these ideas.... just thought to mention it in case it helps...
Thank you so much for taking the time for your kind reply and advice, it means so much to me to be heard and not alone although I wouldn’t wish this on anyone, so sorry you have to endure all this too. I have been gluten free for a long time now which has helped. Also cut out any highly processed food and lots of pre/pro biopics kefir etc. I hadn’t thought of seeing a nutritionist, thank you, I will definitely look into it. I think you may be onto something with the candidia as I’ve had so many antibiotics over the past few years and really strong long treatment with various IV ones when I had sepsis which made me develop active cdiff for a while due to killing lots of my friendly bacteria too. I didn’t really have much of a choice, the side effects from the antibiotics made me feel very unwell for a long time and totally upset any balance but I had no other options. I just want some control back of my body, what is done to it and what I put in it. On the plus side as I now carry cdiff I usually get my own room and bathroom in hospital, so every cloud as they say. Also very grateful to finally be under the care of a BSGE centre so at least this time I know I have the best of care. My specialist endo nurse is also an absolute angel and is in regular contact with me and there whenever I need her, she really does go above and beyond and is so emotionally intelligent as well as medically understanding this disease and all it brings. I fell so blessed to have her in my life.
I hope you have a good support network and are able to control your endo pain enough to have some good times and that your journey is going as well as it can All my kindest regards and thoughts Poppy ☀️
You really are having to endure a lot. I'm glad to hear you have some good support in place. But, I hear you in your need to have some control back over your body. I found doing a parasite cleanse really helpful. It used to be commonplace to treat parasites, but relatively unheard of now. And cutting out all added sugar tends to be a game changer, although it takes a few months, alongside antifungals and probiotics to reap the benefits. I have observed that a lot of 'free from' goods contain a lot of added sugar, so I think thinking outside that is helpful too. I have found that going 'added sugar' free can be hard at first, but that I adapt fairly quickly and the benefits are definitely worth it.
I've had a lot happening in my family the last few years and ended up eating whatever to get by and am now struggling with my stomach again, but I'm going through the protocol again bit by bit and know that in a few months time things will improve. When treating candida/ gut dysbiosis, if you treat it too intensely, too quickly, you can get an Herxheimer reaction, which is when bad bacteria die off and are flushed out of your system too quickly, putting strain on the liver, which is the organ that helps sort it all out.. A Nutritionist should be able to advise you with that process so that it doesn't overtax your system. And as you've dealt with sepsis, I think professional advise in regard to all this would be a very good idea.
I sincerely hope that you will find some relief soon x
Thank you for all your advice, I’ve started to try and very clean eat again after reading your last post. As you say introducing gradual change is the best way to go and I find helps me to keep at it. When I was so poorly with sepsis and cdiff I could hardly eat for a couple of months and found that without trying I had sugar detoxed so am lucky to still be quite repulsed by sweet and processed food most of the time, although I must admit I did slip a lot over Christmas as I was comfort eating due to not being able to do much and the pressure of everything around being festive and happy and me stuck in bed exhausted and in pain. I’m finding at the moment my appetite is very poor now due to the pain and bowel issues so trying my best to only put good stuff in but it’s difficult when I don’t have the energy to plan properly and prepare food. Luckily my husband works part time so he can care for me but even the really healthy food he prepares turns my stomach at the moment. Unfortunately the last time I was really on track with clean eating and exercise and felt the fittest and best I had for years I ended up being diagnosed with breast cancer and then after treatment needed another big endo/adenomyoma op which resulted in sepsis again as I was so run down after the radio therapy. After that I developed debilitating fibromyalgia and was also on breast cancer preventative treatment for 4 and a half years that made me feel even worse with the side effects. I just seem to have been going down hill steadily since then physically and mentally as the endo is also growing again. I was told it would stop after menopause. Your advice has really helped give me some feeling of control and choice back over what is put in my body. I’ve always tried to sort the nutrition side myself and I will definitely be getting some professional advice after my op now I’ve read your post, thank you. I’m determined to rebuild a better life than I have now and I’m hanging on in there by trying to focus on future hopes and having a plan for recovery. I’m not asking for the world, just a chance to join back in with the everyday things I used to take for granted and some independence back . All my kind regards and sending best wishes and hopes that you too are back on track soon. Poppy ☀️
Hi I'm so sorry to hear this. Its good that you have reached out. I do hope you're not waiting to much longer for treatment as this must be so frustrating and destressing too. Sending you a big hug xx🤗
Sorry you had op cancelled. I hope it won’t take long to rebook.
I’m 55 and didn’t get diagnosed until 51 but always suffered. I’ve had a hysterectomy but unfortunately still get abdominal pain, I was told it was in the bowel but that’s never been dealt with if it is.
Don’t feel bad about what you’ve cost the NHS, this condition has been on the back burner for too long and it’s their fault for not getting answers and research as far as I’m concerned, let alone all the gas lighting and having too many ops because they deliberately don’t deal with stuff. I’ve had five since 2020, including missed adhesions, missed gallstones and got them to take appendix, that helped with some pain.
Glad you have a good GP 🙂 that’ll help. Just gone back to mine as gastro written me off 🤦♀️🙄 joining you with Oramorph as just done a bit of cleaning 😬
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Frustration and confusion
Sooooo frustrated !!!
frustration...no support.
Lap - no diagnosis. Frustrated
