new here, possible deep infiltrative endo... - Endometriosis UK

Endometriosis UK

62,296 members48,507 posts

new here, possible deep infiltrative endo, not confirmed yet

Kimbox profile image
22 Replies

Hi,

i’ve just stumbled upon this group after reasearching endo…. I’m 39 years and always suffered heavy bleeding etc, the past 3 years have been terrible, severe pain, constant bloating left side, hip pain, feel a depressed mess if i’m honest, no quality of life due to symptoms whatsoever.

Gynea appt noted retroverted uterus, possible endo, possible deep infiltrative endo, due to bowel and bladder issues… currently waiting on hysteroscopy and MRI first week in September to confirm.

This morning I had lots of blood in my stool which is a new symptom, is this normal of endo?

I’m at my wits end, its taken 3 years to get a gynae appt and all further referrals are taking forever, I’ve complained to PALS, raised a formal complaint, and even complained to my local GP in the hope of them speeding things along, but i don't see to be getting anywhere, I am really angry being left with these symptoms, i’ve not so much as been prescribed a painkiller.

Feels nice to rant, these lot are sick of hearing me in here:)

Thanks for listening

Kim

22 Replies
KamosPains profile image
KamosPains

Yes, this is commone. The docyors wont say it and will try to send you to G.I. and Colon specialists for rectal bleeding. Dont do it!! ANYONE besides an Endometriosis Specialist will misdiagnoise you or say theres nothing wrong.

Endo looks like normal tissue, and it takes different classes to be able to identify it properly. Exspecially around/in colon and other non-reproductive organs.

I had a doctor tell me it was my period from my vagina and I just didnt know the difference. I was 28 with sever rectal bleeding monthly.

2 endoscopy teams found nothing with cameras in my mouth.

An colonoscopy team found nothing with camera in my butt.

3 surgeries later, nothing. Because no one knew what they were looking for. No ulcers doesnt mean no problems.

Dont send a painter to reappolster a couch.

Dont send doctors who are not specialised in Endo to find endo issues.

Sorry youre in the endo group, and lots of hope for healing!

Kimbox profile image
Kimbox in reply to KamosPains

Thank you for the reply…. Yes I have already been referred to gastro, luckily my friend is the ward manager, and has sent me back everything ruled out apart from hiatus hernia.

Wait time for hysterectomy is 18 months…. Not willing to wait, I've had LLETZ, failed tubal litigation, followed by bilateral salpingectomy, really would have preferred all to be removed in 2016 however they declined, cant help but think this wouldnt be happening if so…. Thank you for the reply x

claudia_91 profile image
claudia_91Moderator

Hi Kimbox

Welcome to the community! It sounds like you've had a tough time fighting the endo symptoms for many years without a diagnosis which is something many of us can relate to. Endometriosis UK has guidance on Getting Diagnosed which you can read at this link: endometriosis-uk.org/gettin...

Hope you find it helpful. The waiting times at the moment are unbearably long, it is such a struggle. Painkillers would really help you, how about asking to speak to a nurse at your GP surgery?

If you'd like to chat to someone about what you're going through, Endometriosis UK have a helpline which is run by friendly volunteers who also have endo. You can see the current rota here: endometriosis-uk.org/helpline

Hope things improve for you. We're always here to listen!

Take care,

Claudia

Kimbox profile image
Kimbox in reply to claudia_91

Thank you Clauida,

I have spoke with my GP, she prescribed Nortitriptyline for the pain which i refused to take, Although i do suffer with pain, PMT, and feel depressed, I am not depressed, i’m usually happy ontop of the world, always laughing, singing, just dont see the point in being miserable….. so i was very reluctant to use a anti-depressant for pain management, I do have a good pain threshold, and usually bounce back from op’s….I just feel like today the start of my period, is the worse day ever on a pain scale,this will continue for 2 days, i’ll have maybe 4/5 normal days, the slowly the swelling will start again, the pelvic pain, the moods, tiredness, and its same old same old 3 weeks out of the month…..

Does this happen with everyone??

I have just started yet another 4 month of folic acid due to low folate, this seemed to help me alot last time, especially in the mood department…… is this also normal

Low folate etc

I’m a little horrified reading all the story's, i expected to have my hysterectomy and all be well, life resumes but that doesnt seem to be the case….

Thanks so much x

CryBaby91 profile image
CryBaby91 in reply to Kimbox

Hey, just to let you know that antidepressants to treat pain are actually incredibly effective, especially for nerve pain. Opiate painkillers don't work so well on nerve pain, they take the edge off but it is weird how the brain works! Antidepressant style painkillers work by turning off receptors in the brain :) reducing nerve related pain. They are an incredibly low dose, not enough to treat depression in fact. And generally not even used for depression anymore! There's also some antihistamines that are used to treat sleep disorders, because they have a sedative affect! And viagra wasn't originally made for erectile dysfunction, it was a side effect that was noticed during trials and then they changed tactic with the drug. Please don't be worried by what the drug is also used for, but what the doctor wants to use it for WITH YOU.

Yes sadly the cycle of pain is very common with endo! Are you using a period app to track when in your cycle these periods of pain and fatigue happen? It can be useful for diagnosis to show a symptom diary and a correlation with your monthly cycle.

I'm not 100% on the low folate link. But I guess if you have endo then lots if vitamin deficiency would be possible! We often have anemia with heavy bleeding, and I know lots of us have low calcium and stuff because of having to avoid dairy and red meat. I take a wide range of supplements because my diet is small and I vomit often, so I like to back up with supplements so I don't become deficient.

Try not to read too many horror stories right now, I know that's easier said than done! There are equally just as many positive stories with hysterectomy, but it is sadly not a cure. We don't have one really! Treatment is so so so personal to each of us, what works for you might not for others and so on. So don't be discouraged too much, keep on at your GP and gyne. Ask for a pain clinic referral because they can help with the pain specifically, which is one of the hardest parts of all this. Hope you find some relief! Xxx

Kimbox profile image
Kimbox in reply to CryBaby91

Thank you cry baby,

I’ll keep on until they hopefully give me some answers, my MRI is in September so hopefully i’ll have a clearer picture, I’m just frustrated…. Its not so much her prescribing the medication, I just don't want to take it….. prior to this i rarely took a painkiller, I just dont want to rely on such strong medications if I can help

It……. I’m wacky enough as it is, somethings just make me worse, and give me a fuzzy head….. I just want to feel myself, maybe I’ll have a different view when diagnosed but at the minute, I’m reluctant xx

CryBaby91 profile image
CryBaby91 in reply to Kimbox

I can totally understand that, I'm pretty ditzy myself and sometimes the painkillers I'm on make me even more foggy! But honestly for me the pain I'm in is way way worse than the side effects of the painkillers. Obviously that is personal to me and everyone is different! But if you start to get to the point where you really can't stand the pain then there is absolutely nothing wrong with trying proper pain relief!

You may have already mentioned this but have you tried anything like a TENS machine? Heat, so hot water bottles or a plug in heated pad? Supplements like probiotics? Exercise such as yoga, Pilates and stretching? Diet changes? Even massage can sometimes help! I tackle mine from multiple angles, honestly i dont think there is 1 approach that works on its own. I think we have to take a multi approach to our endo and try attack all the symptoms with different things. It really sucks, I wish there was a treatment that was guaranteed to work. But any relief at all is a victory for me lol xxx

SS44AS profile image
SS44AS

Hey,

I have also just been diagnosed with Deep Infiltrating Endo and can totally sympathise with you. Like you I have a very high pain threshold so I knew when I was struggling with it, it was bad!!! It took me nearly 8 weeks to get my MRI scan results back and have an appointment with the consultant on 19th September to discuss what my treatment plan is going forward. I have also been referred to the Endo centre at QEUH and apparently the wait times for there are horrendous too!!

I have been prescribed different painkillers and currently taking Ibuprofen 600mg 3 times daily which make me extremely tired but sometimes I need to take the maximum dose.

If you need anyone to talk to or just have a rant DM me if you like xx

Kimbox profile image
Kimbox in reply to SS44AS

Thank you for the reply,

My GP has just told me not to take ibuprofen, she suggested a nerve tablet, amitrypline, pregabs, nortitriptyline….. So declined, I don't want to take medication that is going to change my personality further…. Feel like i’m smacking my head off the wall with them, they dont seem to care, I get really overwhelmed when visiting the GP/consultant, and always end up in floods of tears, because you tell them your symptoms, i take pics everyday because they make me feel like im exaggerating it…… I just find them really rude, and lacking in compassion, i’ve been back and too back and too, They make me feel like they are fed up listening to it, I just want some relief…. i’ll see how the POP pill goes and hopefully get my plan on the 7th when i go for my hysterscopy……. Next step is handcuffing myself to the consultants chair ha ha ha ha, stresses me out so much, i’m getting angry with it now…. i am always on the go and hate that this is stopping me being myself….. x

LoveAdele profile image
LoveAdele

Hi Kim, had similar story to yours, you can try get in contact with an endometriosis specialist they should know what may be the best advice. On my case a strict diet with no sugar, gluten and caffeine helped , it will take a while to notice the difference but was worth trying. You may ask for a Tcoil or GNRH antagonist but be aware of the side effects. We don’t have to suffer so much.

All the best,

Kimbox profile image
Kimbox

Hi Adele, I’ve tried all the gluten free diets, no bread etc.

I can go days without food due to being bloated and my stomach size doesnt change.

I’m flat as a pancake today due to 3 days off HMB but it will return by weekend.

GP put me on the POP pill today, i’m not best pleased about it as it didnt agree with me years ago, but i’ll try anything….. other than the coil, my cervix is too sensitive x

CryBaby91 profile image
CryBaby91 in reply to Kimbox

Snap lol I did all the diet changes, like you some days I dont even eat because I'm so bloated and in pain. They help in a way that I'm not grabbing my stomach and rocking back and forth lol but definitely haven't stopped everything! Have you tried probiotics at all? I get some really strong ones and theyve helped slightly with the endo belly.

Kimbox profile image
Kimbox in reply to CryBaby91

Morning:)

Yep, i was diagnosed with IBS years and years ago, and tried everything under the sun, now i’m wondering did i ever have IBS at all, also when I did slimming world when it was red and green days, i only did green days which was rice/pasta/potatoes etc and i think that is the flattest i’ve seen my stomach ever…… seem less bloated today, wonderding if the desogestrel has anything to do with it, as the pain in my pelvis has eased lots……

Bad day
Kimbox profile image
Kimbox in reply to Kimbox

Today just cant believe the difference x

Today
CryBaby91 profile image
CryBaby91 in reply to Kimbox

I've had IBS mentioned in the past too and it left me wondering as well! Your tummy looks exactly like mine haha it's mad how we can be slim one day and look 6 months pregnant the next haha xxx

Kimbox profile image
Kimbox in reply to CryBaby91

I usually have 3 bad weeks, 1 week relatively normal, after a bleed….. then it starts again, I wont get over excited, i’m going to make the most of being able to move today and get all my jobs done…. Just incase xx

CryBaby91 profile image
CryBaby91 in reply to Kimbox

Yeah that was me up to around 2020, then sh*t hit the proverbial fan lol and it just became a daily issue that I never had any relief from. It was just how bad is it today lol! Gyne said when it is just left it gets worse usually, so the last 2 years it has got massively out of control. Definitely make use of those good days love! But don't push yourself too hard :) xxx

Kimbox profile image
Kimbox in reply to CryBaby91

Thanks Crybaby:)

I’ve managed do my jobs, got a call from the hospital, theyve brought my MRI forward to today @ 5pm due to the bloody stools, do they tell you there and then or do you have to wait for results xx

CryBaby91 profile image
CryBaby91 in reply to Kimbox

You usually have to wait for the gynae to look at the scan, so could be a few weeks before you hear anything. And if your scan comes back clear please don't be discouraged, endo is a sneaky condition that hides xxx

Kimbox profile image
Kimbox in reply to CryBaby91

I doubt it will, too much going on for too long for it to be clear, i think its all to do with scar tissue from previous op’s, I had the LLETZ, tubes tied (clipped) that failed 18 months later, I was mortified, then tubes completely removed around 3 months later, I’ve never been right since, think that was 2017, I think the past 5 years has been the most i’ve ever contacted my GP, all the symptoms I’ve been with have been passed off as something else, it was only when i requested a smear test in march as My symptoms are similar to CINII/CINIII, so immediately thought it had come back, the nurse refused to do the smear as she said my cervix as adhesions, which has led to more referrals etc, gynea suspects deep infiltrative endo, but nothing confirmed, have you ever had a smear with endo?? The gynea did the smear but i’ve never had that much pain or blood with one before, knocked me off my feet…. Now i’m nervous for the hysterscopy on 7th sept, I cant even have intercourse let alone think about them messing with cameras xx

CryBaby91 profile image
CryBaby91 in reply to Kimbox

Oh gosh that sounds awful love! Yeah I've had a couple of smears now and they are always painful and I end up bleeding after. I hope this scan shows what is going on finally, the amount we all go through is a joke! Gosh full sex can be awful at times for me too, me and my husband do more foreplay than anything because it is more gentle xxx

Kimbox profile image
Kimbox in reply to CryBaby91

I’m not going to lie sometimes its better than using the head ache excuse ha ha:) joking aside it isn't fair on them is it, if were not rolling off the bed with round belly’s, were moaning about pain….. I am lacking in sex drive which is something they need to help with, what do they give you for that?? Dont know the reason why, if its hormone related or just because half the time you feel a fat mess and in pain…. Love to feel a bit more in the mood, least i can be seen to be making the effort, i know what i would think if he was shoo-ing me off all the time, it cant be nice for the men

You may also like...