please help!!

[Emmaalfie]

I had surgery to diagnose/ burn out endo in July and I had about 4 weeks relief and then it started all over again. The pain is back with new ones. Has anyone else experienced nerve pain throughout the pelvic area, hips, legs and feet since surgery? I can hardly walk some days and I’m really struggling to come to terms with my new body and how my life has changed. Any advice/help with what to do and getting to see a specialist to see what has been missed during my surgery (I suspect it’s a lot that’s been missed) xx

[Tangoandmax]

Hello,

I had surgery 1st of August and am still experiencing significant bouts of severe pain and lower back pain daily. I had pain pre op down legs, but this was common for location of my endometriosis. Pelvic walls/ligaments. I had a lot removed and the consultant has said chronic sufferers can expect it to take months (up to six) to see any improvement so I’m trying to be patient. That said, I am going back to gp Monday to flag everything and request a stronger anti inflammatory.

Was surgery carried out by a general gyne and was is ablation (burning) you had? Excision is best for removal of endo as everything is dug out of tissue meaning there is less chance of it growing back in that place. I’m not sure if it could grow back this quickly but it is more likely to grow back if it was ablation.

If you hadn’t had the nerve type pain pre surgery and it’s all completely new for you I would absolutely go back to your consultant and share that you are having worse pain so that they can check if anything is wrong or it’s just part of the healing process. X

[Emmaalfie in reply to Tangoandmax]

Thank you for replying. It feels so lonely sometimes having chronic pain. It’s hard to explain to people in work or family just how much you are suffering. I have gone back to my GP and he has referred me back to my gynaecologist so I’m just waiting for an appointment. I had ablation because my surgeon explained that she would only be able to remove some of it because she isn’t a specialist so I know there’s more. They suspect it is on bowel, hips and possibly further up than my pelvis. I think something has happened involving my nerves maybe sciatic that is causing my leg pain. It’s concerning me that I’m struggling to walk. I remember having some leg pain before my surgery but nothing like it is now X

[Tangoandmax in reply to Emmaalfie]

It is awful. I went in for surgery and everyone doesn’t understand and keeps asking am I fixed. Like it will be fixed. At the moment I’m struggling more than before, it’s so hard when you go through the lap because that is a slog to get through and don’t see any benefit. I had surgery at a BSGE centre who are confident they removed it all, so Im now left with the realisation my pain is likely adenomyosis - as I have both.

Sounds like referral to a specialist centre is absolutely needed. It’s nice to hear she was completely honest with you about her capabilities beforehand, some aren’t. There can be nerve complications post lap, hopefully it isn’t that. But it’s absolutely best to get checked. The pain down the legs is something I struggle most with, I often just don’t feel like I can walk/stand at its worst.

It’s awful how much we endure! Hope you hear back from the consultant re. an appointment soon xx

[Emmaalfie in reply to Tangoandmax]

Thank you. I totally know the struggle you have had. Especially by so many male doctors who dismiss it instantly. I have been crying on the floor of A&E and had male doctors walking passed me ignoring me. Then they sent me home and told me it was a water infection. I had a GP said it can’t be endo because you don’t have pain with endo 🤯 it’s so hard to fight that if makes you feel crazy. Thank you for the support ❤️ and I really hope you get some relief X

[Tangoandmax in reply to Emmaalfie]

The trusty old UTI fob off. It’s like they have a script of absolute nonsense they spew at everyone, simply because they don’t know anything about woman’s health! It’s despicable.

Thank you! You too 🤍🤍

[Emmaalfie in reply to Tangoandmax]

Exactly it’s a joke. I even went to an emergency gynaecologist hospital. The A&E doctors did loads of test for appendicitis (I told them they was wasting their time) and 7 hours later when the tests came back clear I asked how seeing the emergency gynaecologist and they said “unless I’m bleeding buckets they won’t see me” 🤯 this is why I’m so hesitant to ask for help now X

[Tangoandmax in reply to Emmaalfie]

Its ridiculous! I don’t even bother with A&E anymore, I’ve been so many times over the years. Urine sample, fine. Scan, fine. Bloods, fine. Take tablets wait for gyne. Off you go.

My partner gets panicked and tries to make me go when it’s REALLY bad but even then I take an extra cocodamol and scold myself on boiling hot water bottles until I can only feel that pain. Honestly it’s unbelievable what we go through just to get basic care.

It’s so rough. This forum honestly helps so much though, it can be incredibly lonely/isolating. I hate that anyone else has to endure this but at least we aren’t alone xx

[Emmaalfie in reply to Tangoandmax]

That’s exactly what happens when I go and it’s my husband that makes me go. He feels so helpless bless him. So much has to change within the NHS. I am going through it all again with work, trying to help them understand how severe it is. There is so many misconceptions so people think you are over reacting. As awful as it is, it’s nice to know that there are others going through the same thing and having the same struggles.

Do you struggle with constipation with codeine/tramadol? That is the reason I stopped taking them X

[Tangoandmax in reply to Emmaalfie]

I’m thankfully lucky in regard to my workplace, my managers wife suffers with the disease so he is very sympathetic. It must be such an unnecessary additional stress trying to also get work to understand too, hopefully they take everything on board and learn.

I try to eat high fibre diet to counteract. I’ve always just used them sparingly, as I was worried given they’re an opioid but since surgery they have been very much needed which has been a significant increase on what I would normally take so I have struggled a little. Not as bad as it was straight after surgery on the on oxycodone though, that was awful! X

[Emmaalfie in reply to Tangoandmax]

They are trying to be as supportive as they can. They are doing a risk assessment atm so I have to work from home until that is done. I just don’t think people can relate to pain so it’s hard to explain that it’s so bad it’s causing me mobility issues. Suppose it’s hard to understand if you haven’t experienced it.

Yeah I am trying to only take the odd one if I’m crying in agony. It’s so hard to find some relief. I have cut out diary from my diet and tried the Rheal powder drinks but doesn’t seem to make a difference. I don’t eat a lot of fibre X

[Tangoandmax in reply to Emmaalfie]

Yeah they can empathise but they won’t ever really know unless you go through it.

I did the various suggested diets over the years. Early on, I did have improvement with eating completely clean, but the more things have progressed the less impact has had on symptoms.

[Emmaalfie in reply to Tangoandmax]

Yeah I agree. This is my problem when I’m explaining it to people.

I just think there comes a point when no diet changes will help and the only solution is surgery. It’s just struggling through until you get the surgery. It’s just draining and frustrating 24/7 X

[Tangoandmax in reply to Emmaalfie]

Yeah it really is x

[Emmaalfie in reply to Tangoandmax]

Thank you. I feel a bit better talking to someone who knows how it feels X

[Tangoandmax in reply to Emmaalfie]

No problem. I’m happy to chat whenever you need x

[Emmaalfie in reply to Tangoandmax]

Thank you 😊

[velowatching]

Hi there,

I'm sorry to hear you're struggling. I had surgery about 6 weeks ago and my pain is already building again. So you are most definitely not alone in this!

Has anyone recommended any medication changes now you have a diagnosis? My surgeon suggested some changes to me (which sadly I haven't been able to start yet due to an issue with my GP).

I really feel you on the struggling to adjust to how your life has changed. I've spent a lot of time going "is this how it's going to be forever now?" Living with chronic pain is hard and quite frankly sucks. Do you have anyone you can talk to about it?

I hope you're able to get some help soon <3

[Emmaalfie in reply to velowatching]

Hi

Your message made me cry a little then, it made me feel like I’m not suffering alone ❤️ I have been on codeine and tramadol before and 2 weeks after my surgery but I was worse on them with the side effects it just wasn’t worth it so now I am on mefanamic acid and gabapentin. Not really finding them a great help but I’m not getting side effects. I constantly have heat pads on my back/stomach. I have just ordered some cramp cream from Vancouver but it’s taking a while to get here. I feel like I have tried everything but this is just how it is now with no hope of change. I know that sounds depressing but it was so hard to get a surgeon to listen to me to get my op and now I feel like I’m fighting to be heard again. I have had countless A&E trips, scans, tests etc and one surgeon took pity on me and did the surgery in July which I’m so grateful for but the relief didn’t last long and now I’m doing it all again X

[velowatching in reply to Emmaalfie]

You are not alone <3

Ugh, that really sucks, I'm sorry! Having to expend so much energy trying to convince people that your pain is real and no, it really is that bad, is just so frustrating. When you're in pain like that, finding the energy to do that is hard!

I'm glad you've got some painkillers at least, even if they're not doing masses. My GP just kept giving me more and more codeine. I luckily only had some mild side effects with the codeine (unless I was taking a lot) - slight constipation which my GP advised I take a gentle laxative which helped.

Sending you much love, and hope you get some help soon <3

[Emmaalfie in reply to velowatching]

Thank you ❤️ it means a lot to know it’s not just me.

[ClaudiaGrace]

Hey Emma, I’m so sorry to hear this, it’s so tough to decide to go through the surgery and then for the recovery to not be straight forward is awful. Have you tried taking serrapeptase? Its a supplement that is meant to reduce inflammation and pain I think, my nutritionist recommended it for post surgery to break down scar tissue I believe.

I think it would be helpful if you could ask to be seen by the specialist endometriosis centre now, I’m sure it’s not the end of the world that you had a surgery by general gyne, I did years ago too, but you really should be under the specialists as it’s such a complicated condition.

[Emmaalfie in reply to ClaudiaGrace]

Thanks for your reply 😊 no I haven’t tried that I will look in to it thank you.

Yeah I agree, I think I have had enough of the general hospital doctors now gaslighting me I need to see a specialist. My gynae surgeon was amazing for getting me in as quick as she did. I got married in August and in July I wasn’t even sure I could walk down the aisle. My surgeon was the only one who took pity on me and did my surgery just to give me some relief for my wedding (surgery was 3 weeks before my wedding). I do think it’s a job for a specialist now though, especially with the added nerve pain.

On a separate note does anyone get a puffy face when the pain is severe? X

[ClaudiaGrace in reply to Emmaalfie]

Bless her, what a lovely person. Congrats on your wedding and fingers crossed the endo specialists can do something more for you if it doesn’t sort itself out in time. Would definitely recommend looking in to endo nutrition and specialist women’s health physios as they help me so much to manage. Chloestevensphysio on insta is a good place to start for physio and maybe the book heal endo for nutrition stuff. I can recommend private people too if you want to actually see someone x

[Emmaalfie in reply to ClaudiaGrace]

Thank you. I have tried diet changes but I wouldn’t mind PT, my GP said it wouldn’t help me 🙄 I am going to ring up and ask for a specialist. My surgeon said she would refer me after my surgery but I still have so many questions about my surgery and tests they did prior that I still don’t have the results for X

[ClaudiaGrace in reply to Emmaalfie]

Physio is generally helpful because we can end up with an overactive pelvic floor as a response to the pain which can be helped with stretches & abdominal massage, needs to be a women’s health specialist though. I think Chloe explains the stretches on her insta so you could start with those.

Not meaning to be rude about your GP but they tend to not know much and tbh even the nhs endo specialist consultant never even mentioned physio and nutrition to me which is wild, I found out on here. I guess they’re just very focussed on medical or surgical management which is such a shame when it’s a life long condition that can be managed with lifestyle changes too! X

[Emmaalfie in reply to ClaudiaGrace]

I agree about the GP, I was told by one GP that endo doesn’t cause pain 🤯 I have given up with male doctors because they have just fobbed me off with ridiculous things because they don’t take women’s health serious. I’m sure there are good ones out there but I haven’t met any yet. It’s so frustrating. I follow endometriosisEm on insta and TikTok and I’ve learnt more from her than doctors. I have a leg massager and acupuncture mat that seem to help a little but it’s still 24/7 pain X

[ClaudiaGrace in reply to Emmaalfie]

Christ it’s terrifying isn’t it, hopefully moving in the right direction now though with increased awareness x

[Emmaalfie in reply to ClaudiaGrace]

I’ve spent months trying to absorb as much info as I can so I won’t be gaslit by doctors. It’s so important to educate everyone and have this platform to support each other. I just want to know I wasn’t alone ❤️

[Forest_Green]

I’m so sorry to hear this is happening to you. I’m currently fighting to get a diagnosis myself. Mine started with unbearably painful periods and now, nerve pain exactly where you’re having it, but only in the left side from my waist down.

I am terrified I have Endo growing on a nerve and I’ve been put on a 12-month wait list for a diagnostic laparoscopy. I’ve had to buy a wheelchair because I can barely walk! I’m so scared I’m going to get permanent nerve damage due to the wait.

After begging my GP, I recently (2 days ago) managed to get a referral to an Endo specialist, and now waiting for an appointment, so I’d definitely try and get one! It sounds like you need a specialist. Keep advocating for yourself (i know it’s exhausting but we don’t have a choice with the current climate of the NHS) and don’t settle for anything less than what you need. Sending love your way x

[Emmaalfie in reply to Forest_Green]

I’m sorry you are having such a hard time. It’s so scary and I do think if a man went in to A&E with our kind of pain they would be taken seriously whereas we get fobbed off. I managed to get my surgery and diagnosis within 3 months purely by non stop ringing and emailing the women’s health unit at the hospital. I also made it clear that my mental health was in decline. Keep pushing and you might get it done quicker. The problem with the waiting is that it causes more trouble when if they did it sooner it wouldn’t be as bad.

I definitely will be pushing for an endo specialist. I have been using a walking stick for months now. Before the surgery because of the pain in my pelvis and hips and now because of the pain in my pelvis, hips and nerve pain in my legs. I also feel like my hips are going to dislocate sometimes when I walk X

[Bagel96]

I am 9 weeks post op and still getting pain from my groin down my left thigh/into my knee and sometimes all the way to my foot. Mostly a constant dull ache but some days worse. I have my first follow up post surgery appointment with the gynaecologist on Saturday so hoping for some answers! Seems quite common from what people seem to say on here! Only thing that’s give me most relief if applying heat to lower back and groin area. Hope you get some answers soon x

[Emmaalfie in reply to Bagel96]

That is exactly what I’m getting but some numbness as well. Glad I’m not alone in this. I haven’t got my appointment yet but I hope it’s soon. I am on gabapentin for the nerve pain and it helps a little. Heat and massagers help X