Moon_maiden

Do give gynae Secretary a call and ask for a call back ASAP. GP if you can’t get hold of them. 🤞for answers 🙂

Chloelouise92 in reply to Moon_maiden

I think this may be the next option, I don’t really know what to expect but I guess I won’t know until I try! Thank you 😊 x

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Otohime

My nurse told me at least 6-8 months for recovery before and after I had laparoscopy. However, I went back to work two weeks after because of for me no choice. And I didn’t do very well in the beginning and I had to reduce my working hours a lot. And because of we don’t see what’s going on inside our bodies doesn’t mean it’s completely healed. Even the little cut on the body surface takes times to heal but should be more quicker than the same cut inside our bodies. Everyone’s bodies are different. One Laparoscopy to treat different parts in our bodies. You are the only one person who understand your body. Your body is your buddie. If you are not sure and uncomfortable with what’s happening, definitely call GP etc for help until you are happy. Finger cross. X

Chloelouise92 in reply to Otohime

Wow really! That’s a long time, I guess it’s because it’s the same symptoms that I had pre op but just more intense I’m assuming it’s my normal ‘Endo pain’ but then perhaps it could be I haven’t completely healed. It’s so hard to know what the best option is. My work have been amazing so far and to be fair because of covid we don’t have many children in school at the moment anyway so easier to manage. I just dread to think how I’d be as I’m in so much pain and that’s with doing nothing, I can’t even go for a walk so I am literally just indoors at the moment. Thank you for your reply 😊 x

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Otohime in reply to Chloelouise92

Aweeee so you are one of the heroes , a school teacher! I must thank you for doing your job during this difficult time plus you are in pain! Yes, I wasn’t doing well at work but my colleagues helped me through it. I’m usually on foot and they offered the chair but I was stubborn. But when my face turned blue and shortness of breath, I sat. During this time, to try keep my energy up, I used to take nuts, cheese, fresh salad with a lot of green like spinach maybe with smoked mackerel or eggs or both and a big bottle of water. Then the iron supplement that the nutrition recommended after my blood tests. It did help. I’m furloughed now because of lockdown and recently went into A & E and waiting for gynecologist to contact me. I had to take my cat to vet yesterday and they are only 30 minutes away by bus and walk only little but I couldn’t go, my sons went. I don’t know how severe your pains are you don’t have to wait till that pain to go away. It’s worth check it out. No harms doing that! Although I was unlucky with some nurses or doctors that I had in the past and it’s really discouraging and frustrating for anyone who go through pains not knowing what it is. But please take care. Speak to someone about it. Hot bath is good. Put the candles if you like to get into the relaxing mood but maybe not so much artificial bubble bath etc in case because of that water can get inside from our vagina and not good! Plenty of water. Lay down naked in your bed room secretly to steam off until you feel like body is responding. If that doesn’t happen for the first time, please don’t panic. You can do it again and again for days and weeks and months! Try be stress free. I noticed stresses are killers for endometriosis. Maybe just for me I don’t know. 🤣 Xx

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Chloelouise92 in reply to Otohime

Aw thank you! I’m a teaching assistant in a primary school, been really strange working with all this going on just not the same for the children with all the new rules in place but rewarding all the same! Yeah it’s intense pain, legs back pelvis and my shoulders lately have been bad. Just absolutely wipes me out to be honest. It makes a difference when your work are supportive. I’m really lucky that my colleagues are great but I am missing being at work!

Walking is a no go for me really, I can manage about ten minutes slow walking and then I’m done absolutely exhausted. And yes I think stress does make it worse, being in the middle of a pandemic probably doesn’t help! Hot baths are my go to as well haha hot baths and hot water bottles, just seem to make it a little better! X

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Charlotte_a

I had exactly the same! Feb 17th 2020 I had my laparoscopy they removed deep endo from next to my bowel. I also had the coil put in to try and reduce symptoms. I took two weeks off work then had no choice but to return due to financial struggle but I did struggle being in my feet for more than an hour. I did think the pain was getting better but by week 8 post op the pain was there and I was thinking this isn’t normal so I had my follow up appointment and the doctor told me this was normal it takes up to 6 months to recover from surgery and every woman is different, which I completely understand however he gave me nothing for the pain and I was really frustrated! I had an mri at the beginning of this year which showed nothing. I had my first injection of Prosap to try and reduce symptoms. It’s called dual treatment so I can have the coil in and be on the injection and that’s meant to relieve symptoms. Only trouble is this Prosap injection causes menopausal symptoms and I’m 21 with no children! So you have to take a pill everyday called Tibolone and that counteracts the menopausal symptoms. I have an appointment with my doctor in April that will mean I have 3 injections (1every 4 weeks) and that’s it I can’t be on it for any longer than 3 months (that’s what the doctor said). But I’m one month in and my symptoms have not changed so I’m not holding out much hope! There is a webinar on March 2nd via zoom that I’m going to watch because it’s talking about what’s next in the UK for Endometriosis. There’s no enough information out there and the struggle us girls have to go through is insane!!

Chloelouise92 in reply to Charlotte_a

That’s rubbish I’m sorry you’re struggling with pain! It really is awful, The coil was mentioned to me at one point however I’m 28 and hoping to start trying really soon for a baby. I know my right Fallopian tube is blocked so not sure how it will go although they have said they don’t think I’ll have an issue falling pregnant but I would need to be monitored as it could cause complications. I was on the pill previous to the op for 13 years but I stopped taking a few months before the op and I haven’t gone back on it since. Not that it made any difference to my symptoms just was easier tracking my periods. Oh that’s interesting what’s that through? No there definitely isn’t enough known about Endo and it amazes me because it’s so common! I hadn’t really heard anything about it until I started doing my own research when all my symptoms started x

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Heloo85

I was much worse post surgery, than I was pre-surgery.... Then slowly went downhill further, to a point I’d never been too, now just about to have another, that I hope cures everything!

Surgery is not a cure all for everyone unfortunately, and I have been told so at every surgery! You should’ve been informed too! Especially if you have/had severe disease and needed complex surgery!

Sorry I couldn’t give you good news! You may get better, but, be aware, sometimes you just don’t! Xx

Chloelouise92 in reply to Heloo85

I’ve got my fingers crossed for you that this surgery works 🤞🏻 To be honest I don’t really think they had said that, the surgeon came and saw me when I’ve come out of the op and just said the op had been successful and he’d cut it all out.

I had deep Endo on my both uterosacral ligaments and my pouch of Douglas. They did the dye test also and discovered that my right Fallopian tube was completely blocked which they think was scar tissue caused by Endo. But they said that shouldn’t cause any problems as such.

It’s hard to be positive when I just think I’m going downhill and seem to be getting worse as time goes on not better. Yesterday I could barely put weight on my left leg as the shooting pain going down it when I did was horrendous.

It sounds stupid but I’m glad you’ve said that. Obviously I want to get better but I get the impression that I should be because the Endo has been cut out so it’s almost made me feel like I’m going a bit mad! I hope you’re next surgery is successful for you xx

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Heloo85 in reply to Chloelouise92

You obviously need to keep an eye on your temp, and any other symptoms, like nausea, just incase it’s a post-op infection, although you would expect that to be sooner than 10 weeks! But any red flags, go to A & E!

My ‘Endo’ pain is and always has been 24/7, 365 days a week, since I was 16! I have a lot of adhesions, so is my pain Endo or adhesions, or the damage Endo has caused, or the surgery? Well, personally, I think first and foremost, the vast majority of my pain is adhesions! 10 weeks post surgery, could be you’re forming adhesions that have now caused you more pain! You ain’t going crazy, it can happen, if you’re massively unfortunate! My consultant has always said, and he said it again last week, because I’m looking at a hysterectomy, ‘that this may not improve your quality of life’ and well, I can truly say, he actually wasn’t lying!

I do hope your pain settles, and it likely will! It takes at least 6 months to heal properly, so it may settle more and I’ve everything crossed it does... But be sure, you ain’t going crazy! Xx

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Chloelouise92 in reply to Heloo85

Wow same as me! Every single day I’m in pain, I’ve forgotten what it feels like to not be in pain! It just becomes more intense around period, but I struggle to do anything day in day out. Can’t walk properly etc. I’ve not spoken to that many people that are in daily pain from it. I think that’s why I steered away from thinking I had Endo originally because up until 2/3 years ago I had fairly normal periods just what I would describe as ‘normal period pains’ but my god not anymore!

I defo think I’ve got worse since having the op so perhaps you are right. I’m hoping I’ll get a bit more clarity after my follow up. Yeah I’m convinced mine isn’t surgery pain. I seemed to get over the recovering from the op fairly quickly. But perhaps I am being naive thinking by now I’d be able to walk and be pain free etc!

I’ve found this forum an absolute godsend otherwise I think I’d probably have thought I was crazy! Xx

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Heloo85 in reply to Chloelouise92

I remember my pre-op (diagnostic lap) like it was yesterday... The nurse said “oh have you got Endo?”... I literally laughed out loud and said I don’t think so...

Long story short, I had daily pain, mainly back, normal periods! In fact they got lighter but longer over the years! I just had pain! I recall one period that was painful! Over the years I had strange symptoms like daily pain, passing blood clots from my kidneys, waking up in so much pain for no apparent reason, to the point I would pass out and throw up, at any point, but I don’t think that ever happened when I was on my period. Then I got a massive pelvic infection that warranted further investigation.... That diagnosis of PID turned to stage 4 DIE endometriosis!

I had friends with Endo! It wasn’t that I didn’t know it existed! I knew there was something going on, no Dr ever believed me, I would just never have guessed that! Lol.

So then, just like you, I had my surgery! I ended with severe, severe constipation! I mean 20+ impactions! My pain that once spread from lumber up to mid back, creeped down to become lumber to down the back of the legs! The obvious fatigue and all your symptoms that don’t scream Endo! Back in daily pain! Periods again have not been painful until recently! Had no obvious Endo signs! Periods got lighter..... Then boom, back at square 1 with a pelvic infection and obvious Endo on MRI!

I’d give anything to just have painful periods 🤣 xx

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Chloelouise92 in reply to Heloo85

Wow that’s so strange isn’t it! Mine started as a reoccurring water infection which I just kept leaving as they tend to go eventually. But then I was getting pain in my lower back so thought maybe I’d got a kidney infection went to doctors they did urine test nothing showed but gave me antibiotics but they didn’t help etc.

Just continually got worse from there and within a few weeks I wasn’t able to walk properly, pain in my back, pelvis, down my legs etc. Strangely I’d always found sex fairly uncomfortable (been with my partner for 10 years) but just always thought it was normal. Bleeding after sex, The fatigue everything I had near on every symptom and a few friends mentioned Endo. Weirdly my sister in law had not long been diagnosed with it and said some of my symptoms were similar but so many were totally different to hers.

My periods had never been bad really but I went on the pill at 15 for my skin and I’ve never come off of it until last few months so I’ve never really had ‘proper periods’ as such. But the last couple of years they’ve just got worse and worse.

Took me a while to get a gp to take it seriously then the consultant told me I didn’t have Endo because my ultrasound was clear. Back and fourth trying different pain relief nothing worked and I had my lap and yeah they found deep Endo on my uterosacral ligaments and pouch of Douglas.

They did recently mention potential adenomyosis if my pain hadn’t stopped after the excision surgery but I guess there’s always a chance the surgery just didn’t work anyway. I find it really hard to get my head around how you can have it removed but still have all the same pain if not worse?! There’s so much about Endo I feel I still don’t know 🤷🏼‍♀️ It’s so interesting to hear other women’s experiences though because it’s so different for so many women even though we have the same condition! Xx

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Heloo85 in reply to Chloelouise92

You say the symptoms in people are different? I’ve actually found the symptoms in myself have been different. Looking back I have been in pain in some form for around 20 years! I was on the pill early, at 14, for heavy irregular periods.... I stopped it around 16, had nothing til I was 18 the changed to a copper coil. At 16 my pain started! Am I just soft? I’ve often wondered this.... But then I’ve been through 2 surgeries..... A diagnostic lap, then major surgery to fix me up, and didn’t have an ounce of surgical pain! None, I’d associate with surgery! I’ve been kicked by a horse that tore up my knee, and I didn’t cry 🤣. Avoided any broken bones although been in a few fist fights 🤣.

Pre surgery I would wake up in pain, 9/10 on pain, pass out. I have since post op been in 9/10 pain with no passing out, and passed out with no 9/10 pain.

When my pain shifted down my legs, I begged my Dr to find the pathology! I again knew there was something, but again didn’t think Endo! 1) my symptoms were different and 2) like you my ultrasounds supposedly showed nothing. (Just discovered this was a lie though).

I have heard from hospital today and my MRI is Tuesday, will go back to MDT Thursday, and I should get my surgery date Friday! This time though, there is suspicion of malignancy! One thing they don’t tell you is Endo does increase your risk of cancer 😡. Hopefully it won’t be! My cancer markers are normal, but until I have all this stuff removed, we won’t know!

But yes, everything is possible with this disease! It will drive you up the wall! And it will effect more than you think! No idea why people just think it’s just ‘painful periods’. I know I wish that it was! Xx

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Chloelouise92 in reply to Heloo85

It’s absolutely mad isn’t it! Yeah I’ve noticed post op that my shoulders and arms are playing me up but I’d never experienced that before (other than trapped gas pain after the first lap) but it’s a totally different pain!

Things that I’d just brushed under the carpet before was just obviously not normal! It’s honestly a horrible illness to have and so many people say oh yeah that’s the one where you have bad periods isn’t it 🙄 like you say I wish it was just that!!

I like to think I’m quite a strong person as well when it comes to pain but there’s only so much a person can take before it takes it’s toll on you! I find it mentally and physically draining. I really hope you get your surgery date soon and the mri goes well 🤞🏻 Xx

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Heloo85 in reply to Chloelouise92

The only logical reason I can come up with, is some of us are more sensitive than others!

If you think about the whole physiology of pain, it’s not to heal you, it’s function is to stop you walking on that broken leg, so it can heal.....

I’ve been to Drs, fobbed off to physio, I’ve been fobbed off to ‘pain clinic’ knowing it’s just a waste of mine or theirs time! I have been labelled with ‘fibromyalgia’ or some sort of ‘chronic pain’ and all along I’ve gone ‘no, you need to look for pathology’ and each time, I end up an emergency because a real disease exists! Pathology!.... So unlike what Drs and the pain clinic has told me, that my pain is my nervous system is in haywire, gone wrong, it would appear that actually my nervous system is on the ball and my body is screaming ‘yes but here’... It’s frustrating getting that across to Drs!

My dad was the same with his cancer! He was fit, healthy, fine..... Then started being sick, getting pain, no right! Fobbed off by Drs for a few years..... He had oesophageal cancer! His pain never left him until he died! Because the surgery he had, which was massively extensive, not the keyhole you get today... Left him with masses of adhesions that just caused more pain!

I’m assuming some of us are just more sensitive than others! But it rings true! I’ve come across a couple of pre-cancers in my life, because the symptoms wasn’t unnoticeable! In fact, you’d have thought I had cancer! Are we lucky in that we find out sooner... Some people have little to no noticeable symptoms until it’s too late! Then there’s us, who get major symptoms at even the slightest of disease! Xx

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Chloelouise92 in reply to Heloo85

It’s crazy, i guess you’re right though I’ve never really looked at it in that way. I do wonder with mine how long it had actually been there. I had one symptom of a pain under my rib cage for a few years until they decided it was one single little gallstone causing that pain and removed my gallbladder (the pain never went funnily enough) but I learnt to live with it as I gave up fighting drs about it. That was almost 5 years ago now.

All the other symptoms only started roughly 3 years ago. But it was so sudden I find it hard to believe I hadn’t had Endo all those years before. How much pain a person can deal with is totally dependent on the individual isn’t it. I also think you have to be an advocate for yourself otherwise you’ll be fighting a loosing battle a lot of the time. That’s not for all doctors but I’ve had some horrendous experiences with drs and consultants. I honestly think if I didn’t have my mum with me on these occasions I probably would have considered just not going back and thinking ah okay maybe it’s not that bad, perhaps I can deal with this!

I didn’t know much about Endo either until my sister in law mentioned it and I looked it up. Thank god for places like this as it gives you a bit of reassurance that you’re not mad and actually it’s a really awful illness to live with. Like you say certainly not just bad periods as we are told so many times!!! I’ve been told by a doctor word for word ‘ well sometimes women just have pain and we have to live with it as we never find out what causes it’ 😳 xx

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Heloo85 in reply to Chloelouise92

Don’t they mean they never look into the cause! Gotta at least try before you say you can’t! 🤣

I can relate to the rib pain! My left side is worse and I often get pain up under my ribs! It’s contributed to inflammation in our pelvis that shifts everything up! Gotta remember, when pregnant, babies grow out! If you’ve got inflammation, growths on ovaries ect... The swelling is deep within the pelvis! Constipation can cause it too! Actually, the month before my hospitalisation with sepsis I was in huge amounts of pain under my ribs! That’s what appeared first in my out of the ordinary daily pain! Long before actual abdo/pelvic pain! I actually messaged my dr about it... Then I started getting hot flashes and night sweats, so again messaged the Dr. I’m like something crazy is going on here.... Then I started dropping weight, so I again messaged the Dr.... Then I started with my 9/10 left flank pain, that went on for 5 days... It normally lasts a few hours! I said I think I’ve got an infection! Then it was bring a urine sample in... But I knew it was an internal infection not a UTI and I got so sick of pointing out the obvious at this point I said ‘oh, don’t worry, I’m fine’... Funny enough my period started and this 9/10 pain left? Lol! The opposite of Endo.......... I had my period and felt fine but was dropping more weight so messaged dr again... 🤣!.... Then I started with very transient fevers, then day after I’m like “going to have to go A & E I think I’m going to die” and seeing as they asked if it was ok to contact my brother even during the night, I think they thought it too! I have since gone mental at everyone! GPs, the hospital, my consultant! I have stood up for all us suffers and pointed out their mistakes by constantly fobbing us off! I’m not mad just about me, but each and everyone of us that have been fobbed off!

If they spent more time doing their job and less time fobbing people off, the NHS would run more efficiently! Xx

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Chloelouise92 in reply to Heloo85

It sounds like you’ve had a right time of it! I think that’s the hardest part of it is when you’re being fobbed off because I don’t know about you but for a while I started to think maybe there isn’t anything wrong with me and perhaps some people do just put up with it and there’s no cause. It took a really long time to get to the point of finding out I had gallstones as well. Was told by one consultant there was no way my pain was being caused by it, another that said I’ve had lots of patients that had pain in that area caused by gallstones we may as well take it out and see.

At that point I just would have done anything to try and stop the pain so just went with it. Obviously it didn’t help the pain so my experience beforehand wasn’t great. It took a few years to get to that point after trying physio, pain relief, blood tests etc so I didn’t hold out much hope this time round!

Once you’ve had some bad experiences with more than one gp or consultant it does put you off going back. I’m so glad my mum made me persevere, I mean in all fairness I wouldn’t have given up because I was in too much pain to not do something about it but I defo would have avoided it for some time.

I feel for women and young girls that suffer in silence. My advice is that you know your own body better than any gp or health professional so if you feel something is wrong majority of the time it is! I’ve also had some really great consultants they’re not all the same! Xx

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Heloo85 in reply to Chloelouise92

What actually makes me mad is for years I was going to Drs with unresolving pain! And instead of looking into it, I was fobbed off to physio, had blood tests, oh your vit d deficient, Vit d, more unresolving pain! It actually wasn’t, at any point, investigated! Until I got a big infection!.. Then that lead to major surgery!.. Like going through that once isn’t bad enough, I had unresolving pain again, to be fobbed of once again to physio, to end up with a big infection, to now needing major surgery again!

What would’ve been the outcome, had I been taken seriously all those years ago? I know one girl who was diagnosed young, had multiple surgeries, and although isn’t cured, isn’t needing a hysterectomy at 35 either! Where do I go from here, if the problem persists? I’ve nothing left for them to take!

That’s my biggest bug! Xx

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Afrohair

I've had 3 abdominal surgeries (not for endo )but I've had open surgery and I can tell you every recovery is different I've found that the more work they do internally the more weeks you will be recovering try to relax as much as you can for at least 3 month x

Chloelouise92 in reply to Afrohair

I’m hopeful that it is just surgery pain but not convinced but perhaps that’s because I was over my other surgeries fairly quickly! I had my gallbladder taken out 4 years ago and was back to normal after about 4 weeks and then I had a diagnostic lap in august and got over the surgery pain quickly. Although it was harder to tell because at this point I’d been diagnosed with Endo but didn’t have any removed then until December! Thank you for your reply it’s always good to hear others experiences x

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Afrohair in reply to Chloelouise92

It could be also the more surgery you have the more adhesions and adhesion pain sometimes surgeries don't always give relief hope you feel better soon x

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Chloelouise92 in reply to Afrohair

I find it quite hard to get my head around all the different things to know! I kind of got the impression that they said well they’ve excised all the Endo so I should be pain free! X

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Afrohair in reply to Chloelouise92

Not necessarily true that you will be relieved from surgery some people it can grow back in a few months whilst recovering from the actual surgery.

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Chloelouise92 in reply to Afrohair

Thank you for your reply! I feel stupid saying it but I said to my mum what I can’t get my head around is if they’ve cut it all out there isn’t any Endo left as they say then what is still causing pain? Does that even make sense 😂 or can it still cause pain if the scar tissue or Endo is cut out?! It’s so hard for me to get my head around some of this x

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Afrohair in reply to Chloelouise92

Scar tissue can cause pain and after pains are normal if you've had excision they are healing pains you may think it's endo but some times it's healing pain after surgery I had a c sec 3 week back and I have all sorts of wierd pains some where I have been cut some sharp down below legs throbbing oh the agony of it all I know I won't be right for a while yet sometimes you can take two steps back if you overdo it try to rest as much as you can and don't stress it's also a trigger for endo and slows recovery x

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Bubble_by

I had pain a few months too after my laparoscopy... Only when I started pelvic floor physio did I start to notice a difference.

Chloelouise92 in reply to Bubble_by

Did you find the pain was worse after lap? I’m finding as time goes on I’m gradually getting worse. The last 3 days for me have been hell. I’m not at work at the moment but I honestly can’t see how I would manage a day let alone going back full time!

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Bubble_by in reply to Chloelouise92

Not necessarily worse. It was still painful but it was a different type of pain? Yes I felt like that too 😣

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Chloelouise92 in reply to Bubble_by

Ah okay I have different pain but the pain I had originally also seems to be getting worse and that’s whilst I’m literally at home resting. So strange! I should supposedly have my follow up within next week and a half but I’ve heard nothing so not sure if that will go ahead.

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Bubble_by in reply to Chloelouise92

Hopefully it will. Maybe your doctor can refer you to a pain clinic/someone that can help?

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