Have I made a mistake?: Hello, I'm not... - Endometriosis UK

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Have I made a mistake?

Iamyumyum profile image
10 Replies

Hello,

I'm not sure where to started here but here goes.

I've had gyne problems for years I'd got to the Dr they'd treat a year later something new it would be treated this cycle has been on going for years...2 years ago is where things started to get worse... I was hauling heavy loads and got a crippling pain in my lower abdomen thought I'd strained so carried on my day the best I could spending years in impact sports pulls,strains and torn muscles were common. Late evening that day I had sex with my husband after i curled up in a ball panting like never before tears ect.. I'm a stubborn goat and refused to go to the hospital. The pain subsided 3 days later. Then my periods stopped not something I'm used to over the next 3 months all symptoms of pregnancy came along yet I didn't feel pregnant. Gp sent me to the gyne as I'm sterilised, had a scan,oh let's hope it's a blood cyst he said and you've had a burst cyst on the ovary, you've been lucky. I'll re scan in 2 weeks I went on holiday came home a week later with a twinge during the night felt a gush that woke me.. you can image the rest I'm sure. Back to the gyne scanned everything gone. Few months later all the pain and bleeding came back with a pain in my bum to. Back I went scan n smear all clear.. things got worse I was told to loose weight. .now I was fit healthy and never stopped the weight I was struggling with was because I couldnt train due to pain. So thought sod it I'll manage by my own. Then I started the hemorrhage stage and unable to eat due to pressure in my stomach and back passage. My Gp very concerned put me on iron tablets tremnax I think I was called and omeprazole while waiting for the gyne. They were quick to see me a new Dr yay.. he was very good saying we wants to find the problem get you back to sports and been intermit with your husband. .he tested for Cancer at the same time as doing a internal camera in the old Netherlands. Fab team.. he said hes 99% sure I've got endometriosis and endo of the bowel and possible bladder and that it will have been from the sterilisation surgery I had and I'd need a lanscoprscy to confirm 100% He said he'd help all the way.. we discussed removing what he could during a lanscoprscy (still waiting) and removing my womb as i had children already I couldnt deny his logic he told me to go home and think about it ( my husband wanted ivf as he has no living children of his own) so weeks later get the call we are booking you in for a hysterectomy. I told the dr no to hysterectomy as I wanted an endo confirmation first that my dr had told me I'd be with to endo team ect. .she went on to scold me we are here to do surgery.. I agreed she is the lanscoprscy I'd agreed to not the hysterectomy. I then had a phone call to tell me I was clear of cancer cells and discharged to the nhs gyne for treatment before going back to them? 3 months down the line I loose bowel and bladder control aand mega headaches around my period struggle to eat very hard to exercise, have the most horrendous pain in my back passage when it wants to work..i have put 3stone on in total and lay there crying after sex due to pain. my partner is struggling to cope with the massive drop in our lifestyle and love life. If I do something fun I'mdone for 3 days..

I cant help but feel I made a big mistake not just having the hysterectomy when it was demanded. I just didn't want to remove the only chance of us having ivf in the future as an endo adviser said to me it's my decision and it's very permanent. I only got sterilised because I'd buried a child and ex husband expected me to have an abortion if I got pregnant again ( very abusive relationship) 10 years later I'm remarried , I currently feel like a prisoner of my own doing and my husband's along for the ride.

Family and friends dont get why I don't go out anymore but the thought of fouling myself at a family dinner or day trip just no. I'd rather stay home.

Does anyone have any advice on getting a life back? Or a rough time scale people usual wait for the lanscoprscy? I have I missed my opportunity?

10 Replies
CryBaby91 profile image
CryBaby91

Hey! I'm so sorry you're having such a tough time. I'll happily share some advice but please note I'll be blunt regarding sex stuff haha I don't give things careful names lol.

What forms of pain relief are you using currently? I don't want to sit listing stuff if you've tried it before or you are on it currently. Also have you tried alternative treatments like supplements, diet change and exercise? I use lots of heat relief, it's the best thing for me but we are all different. I also use CBD oil and a TENS machine.

Please be aware that hysterectomy is not a cure for endometriosis. Yes lots of women have reported really positive outcomes from hysterectomy, but endo is a really complex condition and what helps one person may not help another. So please don't beat yourself up over not having it done yet, your fertility is YOUR choice. Has your gynae put you on any GnRH treatments? These are menopause injections that can help with the symptoms of endo. They don't effect fertility long term, so this could be an option while you wait.

Sex wise, honestly some days my husband and I can't have full penetrative sex. It is just too painful and he would never want to leave me in pain, it would make him feel awful and would stop both of us enjoying the sex. On those days we do lots of foreplay with lube, hands and mouths only lol. No penetration. On days when we can have sex we try to avoid positions that are too deep, things like doggy are an absolute no no some days! But if I get on top I can control how deep things go, so that can help. Also spoon position is much more gentle! Sex is about so much more than penis in a vagina though, it is about kissing, touching, cuddling, massaging, teasing....being intimate! Please try not to put so much pressure on yourself to have full penetrative sex, just enjoy having some gentle pleasure and intimate cuddles.

Let me know what stuff you've tried and I'll see if there's anything I can recommend you give a go for your pain. I use a walking stick so I'm not stuck in the house as much, i also have a radar key which let's me in any disabled toilet even if they are locked. This is super helpful!

Iamyumyum profile image
Iamyumyum in reply to CryBaby91

Hi there, thank you for your response. Honestly I love the blunt no sugar approach myself. I didn't know whether people would take to kindly of I did it kn my first post 😂.On the pain killer front I don't.. I apparently dont feel pain like normal people I always keep going like a stubborn mule if it gets to the point of been on my knees in pain I'll take paracetamol. Im used to aches and pains through sports and injuries but it's the pain in my bum and bowels I cant do with tried hot soaks in the bath, ibuprofen paracetamol deep heat ( on my abdomen) at one point but that's it...

I honestly dont want to be off my feet on strong painkillers but starting to feel like standard dont work and wont have much choice as I'm off my feet alot these days anyway if that makes sense.

The diet supplement and exercise I have tried all sorts it's the pain/pressure front again. This was what my daily exercise consisted of.

Run/jog Am before or after school run.

Sit up, Russian twists, pelvic floor, yoga, push ups, skipping and shadow boxing Am PM if I wasnt training at the gym. Afternoon if not working weights another run, evening core work and an 8 mile run.

Boxing club 2/3 days a week depending on work

Football training once a week

Football once a week

Personal training once a week including sparring and leg day.

Basket ball hiking and rock climbing in free time.

Swimming occasionally.

Worked 3 paid jobs 2 voluntary jobs and ran around after 4 kids and a roti. Now nothing other than daily home and kids stuff. I look and feel like the thing that are me.

I've tried just basic mild exercise at home which clearly isn't working for me, squats leg stretching, aerobic vids at home all tried it's all to painful.. I've said to my husband today im just going to start doing intermittent running and where tenas staying close to home and see how far I get.

Food changes I've tried all sorts i grow alot of fruit and veg at home with my daughter ( shes crazy good for 11) it's our hobby together all organic no chemicals. So I tend to eat that.. yes I do eat meat chicken mostly, 10 beef meals a month ish.. say 2 possibly 3 pork in a month but that's like a piece of bacon or a sausage if we have bbq or the rarity we go out for breakfast.

Easing off pasta rice meals dropped to twice a month. Pushing myself to eat wheat a bix after readying on here I can have milk.. as months ago was told to ease off milk as something in it encourages the endo to grow...

I will admit I'm a bugger for Coffee which I've decreased massively in the past 6 weeks.

The old gyne.. nope to everything. My gp prescribed iron and omeprazole she did try with tramaz something or other to stop the bleeding but I didn't agree to good with them so stopped taking them months ago. That's it that's all no lanscoprscy no surgery no pills nothing. Health harmonies discharged me back to the nhs when I said I didn't want the hysterectomy. I've heard nothing since with things getting worse. I need to loose weight for me own health let alone mental health or surgery. Personally I think the struggle with weight stems from been so active and fit with a great diet to been stuck like this unable to eat properly my body now stores everything and my metabolism has just gone f you lol.

In the old sex front I've found i just ain't interested as much as even fore play hurts well its having an orgasm that hurts followed by lots of discomfort and pressure. Lube isn't really an issue most of the time. If hubby is on top the slight pressure on my abdomen as a whole isn't pleasant, if I go on top well erm this is bad.. I found the other day I cant actually open my legs wide enough to actually do it properly.😔 we just laughed about it but after I felt really inadequate.

I've done some reach on endo when the gyne first said about it. The chances of ever getting rid appear none. I tried adjusting food ect but nothing works.. last week after having a busy day I ended up using a pack of paracetamol in 2 days. Then found as the week progressed I was having more pressure in my stomach than normal then finding it hard to swallow. Today I just look.7 months pregnant and uncomfortable.

I read on a endo site that it can spread around the body and if it gets into the blood stream ya screwed. Channel 5 did an endo program which wasnt helpful utter crap if I'm honest saw the comments of FB about it even drs were annoyed.

All I want is the ability to become more active again get some of me back if that makes sense.

Any ideas are gratefully welcome any thing is worth a try.

CryBaby91 profile image
CryBaby91 in reply to Iamyumyum

Gosh! You was VERY VERY active before, I'm really not surprised you are feeling so frustrated! Exercise wise I would say running might be a bit too high impact on your back and belly, but swimming would be fab for both the pain and keeping healthy. Also yoga, it is really really underrated but a good stretch can be so helpful for your back! Exercise which is really high impact or high energy is often counterproductive, have a look on the endometriosis.org site and they have a fantastic section on endo and Exercise :) listen to your body, if it hurts then stop or ease off. Go gentle and try make your aim to be just about being more active and moving your joints around so you don't sieze, please please don't push yourself so hard you break! We have to find that balance of moving enough but not too much that we over exert and then cause more damage.

I really understand the reluctance with painkillers, once you're on them it is hard to come off again, so I get that totally. And they can make you feel a bit crap, but it depends what you take really. There are things that are not opiate based like mild antidepressants, they don't actually get used for depression anymore and are handed out for moderate to severe pain. They have much less side effects than the usual opiates! Like you said, you're finding yourself stuck inside because of the pain, so it is kind of going to be a case of which bad side you would prefer to deal with? Side effects of painkillers or symptoms of pain? I know it is an absolutely AWFUL choice and none of us should have to deal with it. But please don't leave yourself in all this pain, I've been on morphine for years now and I honestly get it. But I wouldn't have any ability to of had any kind of life without the painkillers, so it is definitely worth chatting to the GP and seeing what options you have, then just weigh up if you feel it is worth it. That's totally your call love, but see what the GP says.

For the bum pain I highly recommend getting a plug in heated pad! I sit on mine all day haha it is very soothing and is the only way I can sit comfortably some days. I can also recommend a TENS machine, you can pick them up cheap on Amazon for around £20 so don't get an expensive one straight away. They don't take all the pain away, but they help distract you from it. Obviously won't be massively helpful for the bowel pain but you could place it on your lower back and it may help with that.

Diet is a really funny one, some of us can have wheat, others can't. Some can have coffee, some can't even have a mouthful! It is very personal. What you could do is follow the endo diet for a few weeks, that is quite strict and you would be cutting everything out in one go. Then you can slowly reintroduce each thing one week at a time, that way you notice if any of them are causing any reactions. I found that I can't have red meat like at all, including bacon and pork :( which sucks lol I do occasionally break my rule and then I get bad stomach ache lol. Alcohol is also a no no for me, I can't even have 1 bottle of lager without waking up at 3am and violently vomiting. But milk I'm fine, and wheat im fine too! Caffeine is definitely one I've struggled to give up on too, I use decaf quite a bit because I just don't want to lose my coffee haha! Decaf helps lots, it doesn't irritate my bladder or stomach like regular coffee :) so well worth looking into! I also take probiotics daily, the strongest ones possible. This has really helped the endo belly!

Oh gosh if it is hurting even when you orgasm then something definitely needs to be done! Does the GP know how severe your symptoms have become? Honestly with what you've told me it sounds like you need a referral to a specialist centre! I got referred to a specialist after having a bad experience with the general gynae, they said that because my symptoms were so severe I could be seen by one on the NHS, as I could have more severe endo than the general gynae would be able to deal with. They were right too, during my lap I was stage 3 so it was a good job! Defo keep a symptom diary, it will all help with getting seen by someone who knows what they are doing.

I hated that documentary, it was ridiculous. There was a BBC one that was slightly better, it had a lady with endo on, it's called "A life of pain". There's another one that has endo covered more seriously, that is the Kate Garraway show "Your Body uncovered", it is episode 5. There's also some good bits on YouTube :)

Yes sadly it can come back :( and sometimes the consequences of being left for so long in pain can be life long. What we all have is a bit of a double edge sword! Laparoscopy can be helpful, but it isn't a cure. I still have some pain sadly, but I'm not crawling on the floor and screaming with it. I did a 9km walk yesterday with my husband and kids, I haven't walked that far in around 7/8 years! So whilst my pain isn't gone, it is considerably better. I am acutely aware of it in the background though, waiting for me to come of these menopause injections so it can grow again :( it feels awful to have no way of stopping it. All I can say babe is we all understand how you feel, you're honestly not alone and we all have your back. Please push to be seen by a proper specialist, hopefully he can help you get some quality of life back! It may never be like it was, but you deserve to be as pain free as possible. Xxx

Iamyumyum profile image
Iamyumyum in reply to CryBaby91

The Gp was made aware a couple of months back said he was writing an aggressive letter stating I wasnt been dealt with quick enough and needed to be referred to a bowel specialist to.. i have no idea what come out of it, I've taken it as naff all as I'm still waiting. I'm more sick of been sodding tired like today I'm shattered all I did yesterday was fit a few steps of carpet cooked cleaned a little that's it today I feel so drained. Tried the drs I'd forgotten its bank holiday monday lol so will be on to them tomorrow.

I've looked at the endo diet breifly and will give it a good go. I'll deffo try probiotic as I always look bloated from endo and the omeprazole.

I will deffo be trying to push the issue as I care for my daughter who has health issues wont be able to if I get much worse and that i cant do with. If its meds, swimming whatever itll be done for her as much as myself.

I look for a tens and heat mat thank you it's worth a try.

Glad you are improving that's a fantastic walk. You are very right it's hard as really either way we choose theres cons and risk.

I really appreciate the advice and support its good just to be able to talk about it and be understood.

CryBaby91 profile image
CryBaby91 in reply to Iamyumyum

Gosh you ONLY did all that?? That doesn't sound like a "only" lol, you did loads! No wonder you're shattered. Fatigue is awful, there's not much that can be done for it either sadly. Lots of rest today! Feet up and no more carpet fitting lol you're going to burn yourself out haha please be kind to yourself!

Completely get the worry with the kid with additional needs, my eldest son has autism and adhd, my youngest is being assessed for autism but too young for concrete yes yet and my husband is mild bipolar lol so we have quite a hectic household too and some days I feel like I'm so poorly I can't help all of them like I would want to. It's definitely a concern long term! Sending lots of love your way!

Sounds like the GP is massively in your corner, so that is one thing that you don't have to worry over at least! Yes keep pestering haha sadly we have long long waits on NHS atm! I waited almost 2 years from start to finish, it was really hard and soul destroying at times. But worth it to be seen by a proper specialist! If your GP has made a referral then you can check they are BSGE registered yourself, pop on to the endometriosis uk charity website and they have access to the full BSGE list from there. You can put your postcode in and then see who is near to you, if they are NHS etc. That's how I found mine, I was having symptoms of severe endo and had seen the general gynae with no luck, so I qualified for a referral. By the sounds of it you will too!

Any time love, I hope some of what I've recommended helps! If you ever need a chat you can talk to any of us whenever you need! Xxx

Iamyumyum profile image
Iamyumyum in reply to CryBaby91

Unfortunately no rest. My husband called to say weve adopted a chicken.. so I've spent the past 2 days trying to build a home for it with a bit of help from my son. It's kinda done me a favour even though it's been hard I really enjoyed the couple of mile walk to the pet store with my daughter we court a taxi back mind lol. I'm shattered and honestly I'm looking forward to a few lazy days next week kids back at school so a tidy house between 8 and 3 lol.

I've found the past few days sleeping on my left side seems to keep a bit of the aches away but endo belly got worse Bread seems to be an issue unless I eat loads of fibre and drink all through the night to push it through.

Also noticed that even though chillies aggravate my bowels slightly I actually eases endo belly abit but I think it's more down to my bowels just not working properly.

Suppose it's just finding the best norm while I wait really.. I appreciate all the help Crybaby as it's more than I've had from the drs.. I'll have a look at the BSGE as I didn't know about that and its something I'll.ask the next consultant I get lumbered with.

The whole family bit just gets me down hence the drive to do a hutch as my little girl is excited to finally be having a chicken she was promised by Dad lol..

Thank you for all the help and advice its greatly appreciated.

Take care of you and yours and hopefully you have a good run of health soon lovely. Xx

Sabrinacolada profile image
Sabrinacolada

Hi,

I am so sorry you are going though this. Having a hysterectomy is a very big life decision and without diagnostics confirming endo etc I can understand your decision.

The fecal and urinary incontinence during your period etc could possibly imply deep or severe stage ( where it is on or infiltrated the bowel/ bladder) I'd personally rediscuss with a doctor. In my case I had been dismissed as having a follicular cyst causing pelvic pain ( but it didn't explain ally symptoms- urinary and fecal pain, reduction of sensation ).

I felt I had no choice but to go private. I had diagnostic laporoscopy that found endo. Nhs lap times for here I was told are over 6 months. As per some of the other posts other options are more imaging experienced endo ultrasound scanners ( see Lindles post this week) or mri to identify this. Less invasive/ imaging is what I would have done in hindsight but I'd been told its a cyst thus hoped I'd have surgery just to remove it and get back to normal despite even my own belief it was endo!! The extent of endo I have surgery should be done via an endo centre-3 surgeons working together. Thus I am on the waiting list to see an endo centre ( nhs).

In my case endo had caused adhesions between the sigmoid colon and uterus/ ovary. The repro tract was completely buried in scarring. And a nodule in the broad ligament. The surgeon was able to remove the larger attachments to free the bowel , repro tract etc. I won't lie to you I am not completely pain free post op but some of the sharpest stabbing has gone. I can use nsaid rather then opiates now.

My concern for you is if you also had adhesions / scarring on the bladder or colon just taking contraception etc may be limited or masking this and as if it gets worse you could be left with a frozen pelvis and or infertility.

Usually severe endo is diagnosed and then you are reffered to a endometresiosis centre. Could you get reffered back to gynae / explain your full symptoms and lack of quality of life and ask for diagnostics to confirm endo? I.e. further scans ( again see lindles post this week about ultrasound and ask re sliding sign/ ensure they have experience in deep endo detection). Or mri, diagnostic laporoscopy.

If private is an option find a scanner specialised in finding deep endo. Once confirmed deep your gp/gynae has to refer to an endo centre. This will jump waiting for nhs to diagnose. Endo centre is where you will receive the best care since they have gynaecology, colorectal and urogenital and from your symptoms it sounds like all of these could be affected.

Hysterectomy isn't always cure if endo lesions in other organs already e.g. in your case if in/ on the bowel this can still flare up. Ideally they'd remove all adhesions/ nodules as much affected tissue where possible hence the need for a multidisciplinary team.

Hope you get the help you need. Unfortunately you have to be persistent with your gp/ gynae. Even if it means changing GP ( I've found a really good one). They have to understand this is affecting every element of your life.

Big hugs, sabrina ❤

Iamyumyum profile image
Iamyumyum in reply to Sabrinacolada

Hi Thank you for your reply. I'm so sorry you went through that and have begun your journey to recovery ( as best as you can with endo)

Yes the gyne from heath harmonie did say hed have a bladder specialist with him for the lanscoprscy and that they'd do there best to remove all they could fine, that they cant get 100% of it all but id be sent to the endo team for the bowel specialist and any one else I may need to see depending where or how much damaged was caused by the endo he believes i have. Like i said I've had nothing after saying no to the hysterectomy which I feel isn't right but just though oh theres alot of other people who will be worse than me.. legit nothing.

I saw that post and responded she sent me a message and I've join the group on fb and following her page. I also contacted a place online about a self referred MRI as my drs have said nothing about this been an option. The online autobot said I'd need a phone to discuss what's best.. so will see how it goes. I've got a very low tight budget at the minute anything more than £300 I'm saving for a few months. Private surgery is certainly out of the question until I can get back on my feet and back to work.

Everything you said I thought as I read up on endo at first I was worried about having bags but now I dont care as long as I can keep having fun with my kids and back to some sort of life.

I will get on to my GP, my Dad has advised I speak to the practice manager as they will be able to see where I am at and advise the next steps to complain. I just dont like to complain though.

Thank you again for the advice and will certainly be trying to push the issue.

Sabrinacolada profile image
Sabrinacolada in reply to Iamyumyum

Glad you're managing to take some steps to hopefully get some help. I agree it doesn't seem right that hysterectomy was given a the only option. Such a big decision you'd want a definite answer to even decide that before consenting.

Yes your dad is right hopefully the practice manager can help. Maybe ask if any of the GP have an interest in women's health.

Yes I hate complaining too but sadly sometimes if something isn't fair or you've not been treated appropriately they have to be aware. Plus on the positive side it may help others not just you e.g. if there are gaps in knowledge / steps regarding endo they could enrol staff on further training etc.

All the best,

Sabrina ❤ x

Iamyumyum profile image
Iamyumyum

That's a very valid point. Honestly dont think theres enough awareness for endo.

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