Hi all. I was officially diagnosed with moderate, deep infiltrating endometriosis in feb 2022 through laparoscopic surgery. They treated some of the endo with ablation and fitted the mirena coil as further treatment. After numerous follow ups with that hospital as I was seeing no improvement, they finally referred me to an endometriosis specialist at St. Marys hosptial in Paddington. However, I've been waiting since August last year and my first appointment isn't until the end of March and I am suffering constantly with debilitating pain, spreading from my pelvic area, my lower back and down my legs.
I have been having a flare up that's lasted over 2 weeks, co-codamol and naproxen is not effective pain relief anymore, I went to A&E and I waited almost 13 hours for them to tell me they can't do anything for me and I should speak to my GP. I'm 22 years old and my life is severely being impacted by this, I'm frequently off work, I have no social life and my mental health is in tatters.
I just am desperately looking for advice to anything you have found to help while I wait for this appointment?
Also I was wondering if anyone has gone private and roughly how much this might cost, health insurance won't cover any of it as its a pre-existing condition.
I really appreciate any support or advice anyone can give x
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rachelgreen22
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So sorry to hear that you are still in such pain! If you are looking to go private, what I would suggest is find a private hospital that can do your consultation as private but then can move you on the NHS services. That generally speeds things up the process and you get private care under the NHS. I believe the great ormond hospital in St John’s Wood is one of them, and there’s others I cannot remember at the moment.
It took me 5 years to be seen for a laparoscopy through the NHS between not being believed and appointments that were scheduled years after. Funnily enough I still haven’t had my post operative appointment for the laparoscopy I had in September.
My advice would be to email the endo clinic, email address should be on the appointment letter.
I found no relief after surgery and the iud, afte 4 months of 2 periods a month, but then I asked for the mini pill as well. After 3?or 4 few months finally stopped periods and although I still have chronic pain no longer have excruciating pains.
Also explain in email that can’t cope with pain and ask for an appointment with the endo clinic pain specialist. I wish I asked to see pain specialist years ago, I assumed that once saw the clinic I would automatically see pain specialist but you have to ask. I’m now on special medications and the pain specialist wants to give some injections in my back which might help for a bit longer and might indicate some pain is more nerve based.
Are you able to take a short notice appointment? If you can, let them know in email you are happy to go on cancellation wait list to see them sooner. I got all my appointments and surgery sooner by accepting short notice appointments, I got my mri as a cancellation with 2 days notice then a month later I got my surgery with 4 days notice!! Didn’t even get mri results before my surgery.
The email address might be just for general gynaecology email, but highlight in subject for endo clinic.
Before my surgery I was taking 8 paracetamol , 3 diclofenac (plus stomach protector)every single day.
Then on really bad days I would take 8 Tramadol, and 8 codeine as well. Plus tens machine and heat pads.
I currently take 8 paracetamol a day plus diclofenac and now have an opioid pain patch I wear 7 days a week. I also have baclofen which is for when the cramping is extreme. But I don’t really need now my periods have stopped.
Your Gp should be able to prescribe more than what you are taking now. I would ask for codeine on its on and then take the paracetamol and anti inflammatory on top of it. Also I would take your anti inflammatory every day, it takes a while to build up and reach peak performance so as I had extreme ovulation pain i decided best take all the time.
There are options just have to push a bit harder for them, nothing is offered unless you beg!
Good luck with emailing clinic hopefully they can help a bit quicker, but try gp as well and ask if any different pain med combos they can reccomend.
Hi Pam, thank you so much for taking the time to respond! I will definitely email the clinic and ask for a referral to pain specialist as I really am not coping well with it - Interesting about the injections in your back because my back pain is horrendous will be asking about this too .
it doesn’t help that I am a genetically poor processor of opioids so they don’t work on me as well. After my surgery I woke up in pain and was still in pain when sent back to ward despite them giving me max dose IV morphine .
When I woke up from surgery the only positive was that I immediately knew my back pain which I had almost all the time for that last 6 years was vastly improved/ they said I had adhesions and Retroperitoneal fibrosis, everything was stuck the lining of my insides at the back.
A week later when I got my period, the horrific back pain was gone. Unfortunately my period pain was still excruciating.
Still grateful daily back pain is gone though. When spoke to pain consultant who worked with the endo clinic, I said my period pain was as bad if not worse than labour pain( which I had home births so no major drugs). And lasts for so long, I said I wanted an epidural as that is the only option to give complete pain free labour, but obviously can’t happen at home or every month! But I just needed to put out in the conversation that you wouldn’t leave a pregnant labouring women in the pain we are in.
Also they were so heavy, I have to laugh in an almost ptsd manner at how bad they were. Seriously can’t believe I was walking around with that blood loss. I used the largest menstrual cup I could buy plus period underwear and would still be emptying it every hour. Like a war zone.
So glad to have it under control although took nearly a year from surgery and IUD and 4 months on the mini pill to help.
If you can afford the surgery privately or beg and borrow the money, at your age I would consider it a lifetime career investment. Honestly you have too much life to live another 2 years like this.
Make sure you do research and meet one or two consultants before booking surgery.
Also request all your notes and images from hospital to take to appointments, you can request through PALS at your hospital. Mine has a form online you can fill out.
There is a doctor who’s website and blog I’ve found very helpful and at your age I think looking at diet to try and help stop future growth is worth the time and effort. She does try and heavy sell her own vitamins stuff but the info she puts out is good. Dr jolene Brighten and another one to read is dr Lara Briden. Both have excellent websites, I ended up printing pages to show people as they were well written. And as one says- it is a whole body disease and is not a hormonal disease but is a disease affected by hormones.
I do still use a lot of daily supplements like high strength magnesium complex, NAC, high strength omegas and serrapetase and nattokinase. Plus various other vitamins. But I am very choosy about which vitamins I take and do alot of extra research. I am considering doing the hormonal diet plan… but with children I’m not sure how hard it will be. Needs to be suitable for the whole family.
It really is awful how much they dismiss women's pain! I am definitely considering going privately as I cannot live like this, I feel so unwell constantly and its not just pelvic pain, its affecting my bowels and stomach too im sure - very interesting you say about it being a whole body disease - Thanks for the reading recommendations I will for sure have a look at those. I honestly really appreciate you taking the time to share your experiences and your advice, thanks so much! x
Private costs usually from 6k to 12k. It depends on the severity, complexity and location of the surgery. Most places are quite transparent with their cost if you contact them. Don't just go anywhere though, look for a well-reviewed specialist xx
Hi, I'm so sorry to hear you're in so much pain, I had exactly the same pain, in my back, legs and pelvis. I found taking ibuprofen a week before I knew i due on my period helped. As endometriosis is a inflammation disorder, taking ibuprofen helped me feel like it was calming it down in a sense. Hot water bottles were good for me, have you tried the machines you can get specifically for endometriosis where you put it on your stomach and it numbs the pain?
Hi, thanks for your reply. I have heard about taking an anti-imflammatory everyday, so I will try this! I use lots of heat and I have bought the myoovi tens machine thats supposed to help but I can't really say if its that effective, maybe just need to use in combination with other treatment x
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