Sciatic endo symptoms & waiting for surgery

[endo_the_stigma]

Bit of a niche one for you... long story short, I am all signed up for my first laparoscopy surgery (NHS Birmingham women's) and am awaiting a pre-op appointment confirmation/date for the lap - I should note that I was able to get a diagnosis through an MRI scan of endo and adenomyosis so it won't be a diagnostic surgery, just excision.

Recently I had to visit my GP (she's defo sick of me😅) because during my last few flare ups I have had awful leg pain and lost the ability to walk a few times which is concerning. She assessed me and couldn't find anything worrying so thinks that my endo may have spread to my sciatic nerve and that I should let my consultant know. I have just got off the phone with my consultant's secretary to see if she could pass the information on and also to see if I could get my surgery expedited due to severity of my symptoms and she has made me an appt to see the consultant in just over two weeks to go through these new symptoms because it is worrying. She said that she will then decide whether to get more imaging done or she might just speak to the waiting list manager and get my case prioritised as urgent so I can be seen for surgery much quicker.

So, my question is, has anyone been in a similar situation? And if so, what was your experience and how long did you have to wait for your surgery if you were prioritised/marked as an urgent case?

Like I said, this is a bit niche but I don't have anyone else to ask about this situation.

Much love💛

[Avourneen]

I had this didn't get anywhere at all with NHS so had excision privately. It's a lot better now but you need a good surgeon to deal with it. At least you have a GP who knows about endo it took me two yaeras unable to walk before someone worked out what it was. Well sone for getting seen at all on the NHS.Good luck.

[endo_the_stigma in reply to Avourneen]

Thank you🫶🫶

[BloomingMarvellous]

Sadly yes , still have issue with left leg and loss of function. It’s a thing. Not that niche am afraid

[Poppyg16]

Hi, I’m so sorry to hear of yet another person suffering, I really feel for you as it’s a lonely path many of us are on but this forum really helps me not to feel alone with the many issues endo can cause for us, sciatic pain often included.

Is good you have managed to get an appointment in a couple of weeks. It shows they are listening and taking you seriously. I have been on the ‘urgent’ list since June and have been told that it will probably be late feb, early march now as the winter pressure, Covid backlog and all of the strikes have really affected waiting times. My consultant at a BSGE centre had wanted to get me in before the end of 2023 and has tried to expedite a date for me as my latest mri has shown rapid growth in 6 months since the last one and the symptoms leave me bedridden most days now. I also have fibromyalgia which is made worse by the endo. I’m also on the urgent list because I’m post menopausal, been stage 4 for decades, had 10 previous surgeries and it’s getting a bit dangerous in there with the spread and damage it’s caused/causing, and bowel enrolment.

Have you got an endo support specialist nurse on your team? Mine is fantastic and calls me every couple of weeks to check in which makes me feel safer as I keep developing related abdominal infections which in the past has led to long stays in hospital. It also helps to talk to someone who gets it!

Maybe you could call your consultants admin to see if they can offer you this support, it really does help to be able to report changes and keep you updated on waiting times so you don’t feel so adrift.

Hang on in there, I know it’s difficult. Someone once told me that strength is shown when we are at our most vulnerable, not when everything is wonderful. It made me think of myself differently as living with endo most of my adult life had made me feel weak and less somehow. Now I can recognise that strength and it helps to make me more determined to push forward. From the many posts I read on here I recognise that strength in others and you.

Hang on in there, I hope to read in the future that things are moving on in the waiting time and all is getting better for you. All my best regards Poppy🌞

[endo_the_stigma in reply to Poppyg16]

oh my goodness Poppy I am so sad to hear how much you've suffered and endured over the years😭I can't imagine how hard you've had to fight to even be listened to and then keep fighting for the right treatment, I'm so sorry. Thank you for sharing all that and giving me some helpful advice it is really appreciated! I feel like the NHS is just a complete nightmare at the moment and if I could afford to I would go private for surgery in a heartbeat!! I had a letter over the weekend, sent before I phoned them and had an appointment arranged on the 22nd, which was confirming a general consultant appointment for July to see how I'm doing??? Yet the consultant said to me in December 2023 that my surgery would be in less than six months and she even said 'I don't think we'll see you before christmas so I'll see you next year' which gave me so much hope but now its been completely crushed yet again😪 xxx

[Poppyg16]

It seems to be part of life to play the waiting game when we have endo! My wish is that in the future this horrible disease will be treated more seriously when people first present and that there will no longer be so many forced to live half lives. It just makes me so sad to keep reading what is happening still to much younger than me. It’s crazy that something that affects so many is not more mainstream and known about.

I had breast cancer 6 years ago and the nhs was amazingly with that, it was fast and I was phoned promptly with appointments at each stage. The whole process was taken out of my hands and arranged by the hospital and all I had to do was keep turning up for treatment. I couldn’t fault it, it was very little time between diagnosis and the tumour being taken out. It’s a shame endo isn’t treated more urgently.

I know it’s difficult but when you go on the 22nd take all you need to say written down so you don’t forget anything. It’s so easy to get overwhelmed with emotions as by the time we see someone we are often feeling so low and frustrated.

As for going privately, I once managed to save up for a consultation with a endo specialist and told them from the outset that I couldn’t afford to have surgery privately. After they had heard my long desperate backstory they put me on their list straight away at a BSGE nhs centre, arranged an urgent mri and actually said it would be better to be seen by them there as it was all set up to deal with complex cases with a whole specialist experienced team. I’m still with that centre so feel very lucky and grateful to finally be in the right place after all the years of surgery and not being treated properly by general gynaecologists.

It wasn’t until the last few years that I actually found out we do have some say in where we receive our treatment which I found quite empowering to stand up for myself more.

Is there anyone you can take with you to the appointment? I often get so overwhelmed that I forget what is said or don’t hear correctly so need someone I can trust to advocate for me to be there too.

Keeping my fingers crossed for the 22nd and so hope it will go well for you

Take care Poppy🌞

[endo_the_stigma in reply to Poppyg16]

Wow, that's amazing that they were so efficient when you had cancer but just goes to show that they can be organised etc with appointments if they care enough and clearly endo doesn't have the same weight when it comes to being taken seriously

Yes, totally agree and I do keep a journal/log of my daily symptoms etc and I will write any questions down before I go so I don't forget (I tend to do this anyway as I always forget in the moment when I'm anxious). Luckily my mum is coming with me and she knows all the ins and outs of what is going on everyday and also what we need clarity on etc

I was initially seen privately too as I could afford the initial consultation and they sent me for an urgent MRI like you which showed up extensive endo and adeno and they referred me to their surgical team at the BSGE centre but through the NHS as they knew I couldn't afford it privately. The private team were very good and efficient with everything but sadly the NHS is so poorly run and everyone is so underpaid its a complete mess and everyone with endo seems to be in a similar boat unfortunately🥺

Thanks so much and lots of love to you, too.

Lily xx

[Kieraface]

I had this! With my endo it was sitting against my back wall and putting pressure on the nerves so I was constantly getting sciatic pain and my legs would go from underneath me! It’s much better since excision. Like you I got diagnosed with endo and adeno via MRI and had excision in October. Definitely feel better for it. Hopefully you will too xxx

[Sabrinacolada]

Hi ,

Sorry a bit late to reply. I had sciatic signs initially right side but eventually in both limbs on and off that were worse during menstruation. I am stage 4 with adenomyosis. When both limbs became tingly and weaker earlier last year I ended up having an mri ( orthopedic said a disc lesion but not of clinical significance to cause the signs) and nuero also said not brain related etc. The endo specialist I was under wasn't sure about in both limbs ( more often in one) so I sought the opinion of a neuropelvic endo surgeon ( happy to message details since in the uk not many). Important to know from studies endo can even be a couple of cm from the nerve but still cause symptoms. There are cases where it can be on the nerve directly but supposedly less common ( an mri won't show unless a larger nodule is identified and there are areas of the nerve path that aren't as visible. Also dependant on settings/ who interprets etc). The good news is after my excision surgery sept 23 I have so far no sciatic signs at all even at menses ( touch wood!).

In terms of wait times I was marked urgent when the above happened and in addition my colorectal signs got worse. My GP had expedited a couple of times with no success. It got to over 10 months with no op in sight ( told more like an 18 month wait for this region) so unfortunately I went private. Waits are very area/ hospital specific so hopefully you have more luck . I asked " the women having MDT endo surgery right now how long have they been waiting?". Was told prior for this area is a 74 week pathway, it helps to know how many weeks you've waited already as a rough guide. Also ask if marked urgent if this changes. I really hope you get your op soon hun.

❤ Sabrina x