Progression of endo - How fast can symptoms worsen?

[Rhiann]

Hi everyone,

So I've been to a specialist gyne that has a good knowledge of endometriosis, and she seems pretty convinced that I have it.

I've had a few milder symptoms for well over a year - irregular and heavy periods (every 5 days at one point), painful bowel movements, constipation, nausea/vomiting randomly, painful sex, fatigue and period pain outside of my period.

However, its only been roughly the last three months that I've developed about 15 more symptoms inc. mucus in stool (sorry tmi!); pelvic pain almost every day (including in my vagina); back pain; leg pain that feels like sciatica (a gnawing sensation like severe growing pains & difficulty walking due to weakness/knee pain that sends shocks up my thigh and down to my toes), tenderness all over abdomen and more.

I know that all my symptoms may be due to endometriosis, but from what I can tell the leg pain would suggest endo aggravating my sciatic nerve, and maybe endo in my POD for the bowel symptoms. Is it possible for endo to have suddenly became much worse in the space of a few months? Or should I be considering something else? I'm waiting for a laparoscopy, but I'm now wondering if I should consider other avenues - I just can't find anything on how fast the symptoms of endo can progress.

I've had to intermit from university for a year, because I couldn't hope to keep up with the work expected at Cambridge (really is a ridiculous workload haha), and its reaching the point that I cannot walk enough to leave the house.

Please could you maybe share your story and if your symptoms have suddenly jumped like this? Or if you know of something else that I should maybe consider. Any help is appreciated, I'm getting really desperate and my normal GP basically shrugs every time I go to him

Thank you for reading this, and I would love to hear your thoughts. This site is immensely helpful, and I trust people who have experience of endo in their knowledge more than my GP who seems to think endo is just painful periods!

Rhi x

[Impatient]

It only takes one period or menstrual cycle to transfer endo cells to a new location where they can nest and by next month start bleeding from that new location and the blood lands on fresh tissue, irritates it causing pain and perhaps spreading yet more cells to a new location again.

Not all endometrium cells successfully nest and start a new lesion of endo elsewhere. It very much depends what they land on and how well your own body's immune system either tolerates the new cells or flights off the invaders killing them before they get too comfy in their new location.

Some people can flight off the cells and stop them nesting else where and remain endo free for years, some have a very weakened immune response and it doesn't take long for endo to run amok.

It very much is down to the individual person - but it only takes one period bleed to potentially send endo cells elsewhere. In reality most cells from the endometrium do not form new endo locations when they head off round the body and don't flush away with a period down through the vagina.

Why some do stick and some don't is not entirely known- otherwise we'd have a cure for endo by now.

But there are changes to the chemical make up of cells that makes this more likely to happen in some people than others.

[Rhiann in reply to Impatient]

Thank you so much for sharing your knowledge. It does make sense, and means I guess that time is not at all a factor. I was just concerned due to the symptoms being so suddenly worse, that it might be something else entirely (or a figment of my imagination!).

To your knowledge is it possible that stress/trauma can exacerbate the situation and make people more susceptible to it spreading? Its just that seven months ago I had a very traumatic experience whilst at uni (I will just say that on a night out, I let someone go buy me a drink and you can imagine the outcome). Due to this I've thought that my symptoms might be the result of PTSD and all in my head, but I had symptoms prior to the attack, and many are not just pain but something clearly real. After the event I didn't have a period for 4 months (due to psychological stress, not pregnancy). Is it in theory possible that a build up and then getting my periods back could be in some way related to my symptoms?

Sorry, I know you may not know the answer to this. It's just that I've read several of your comments on other posts and you seem more knowledgeable than most GPs about this stuff.

Thanks again,

Rhi

[Starry_Eyed22]

Wow you have just described pretty much all the symptoms I have! Have my laparoscopy in 5 weeks X

[Rhiann in reply to Starry_Eyed22]

Have your symptoms gotten much worse suddenly as well? It's horrible I wish you the best of luck! x

[Delady in reply to Starry_Eyed22]

Same symptom legs belly bloated pain in torso back n front..nausea cramps stabs . .chronic legs pain cant walk been 6weeks!seem a gyno today just go on a waiting list..y

[endogirl22]

Hi hun, my story starts with me being in so much pain i ended up in hospital alot they just dismissed me even when the ambulance staff had to give me morpine and at one point i was called a hypochondriac!, i ended up after having my son in 2010 having a scan that showed i had a 7cm dermoid cyst on my right ovary. I then waited 6months for a op to remove it and then found out i had endo, the nurses didnt explain was it was and told my the cyst had been removed at it was 10cm in the end! I searched online but never understood what i had, i became pregnant with my daughter in 2011 and had her 2012, i have been fighting for a lap as i have been suffering, i finally had a lap June this year after i had seen a doctor who told me it was too much for them to operate on the nhs! (but boob implants are perfectly acceptable!!) where i was told any endo would be removed unfortunately they did not remove anything as it had advance to grade 4! It had affected my kidney, bladder, ovarys, ureta, ligmants, douglas pouch, basically every where , and a severely deiseased area next to my bowel, i eventually saw a specialist in sept and my lap was booked for jan, i rang up on monday 29th to ask if there was any closer and was booked in for friday 3rd oct, i went down at half 10am for my op and woke at 20 past 3 my op had finished at 20 tp 1, i fell back asleep and woke up at 5 i was out of the hosp at 20 to six the nurse basically kicked me out! And i dont know what they have actally done as the nurse couldnt read the docs writing, my experience has been awful and degrading due to the fact people dont believe me or doctors dont, and i have been treated awfully, my endo went from grade 1-4 in 3 years but some people dnt advance so quickly, im glad to see you have seen a specialist so soon and hopefully you will have much better treatment than i have, i wish you all the best hunny sorry my story isnt so happy lol , i too have the leg and hip pains but also headaches, i have had the coil implanted to help slow it down i had that done in 2012 xxxx

[Rhiann in reply to endogirl22]

Oh my god! I cannot believe what you've had to go through with the NHS. It really is the worst thing to have people not believe you (typically men, if you will forgive my gross generalisation). My mum got so fed up with no one taking me seriously that she decided to pay for me to have a private consultation. Its mad the different treatment and consideration you get in a private hospital.

I do get headaches too! In fact I had my first migraine last week, which is probably related. Not usually one for headaches.

I wish you the best, and thank you for sharing your story, clearly there is no time scale for the worsening of endo.

Rhi xx

[Delady in reply to endogirl22]

Far out this os how i feel .im getting chest pains too .legs are bad.dibilitating

[Emma-louise]

Hi Rhi,

You've pretty much described exactly what I'm going through at the moment.

I had a Lap in June, which diagnosed Mild Endo (although symptoms don't feel like its mild) and I've noticed I've gradually got worse since. I have the back/leg pain a lot, and i pretty much have the stomach pains everyday - whether or not I'm on a period/ovulating/any other crap coming out of me!

I really hope that you get a lap soon, and that it helps sort your symptoms out. I must say i did feel better the 2nd month after my lap, but i have definitely been getting worse since unfortunately. I know the lap isn't for everyone though and so i just hope it'll work for you.

Please keep us updated

Emma Xx

[Rhiann in reply to Emma-louise]

Hi Emma,

Thank you for letting me know that I'm not alone in this sudden development, though I'm sorry that you have had to experience it. It's a disheartening to hear that the lap isn't the cure all, although I knew it wasn't before. I'm just going to have to go in there hoping for the best. To be honest, I've reached the point where I just want a diagnosis now, so it can be dealt with in whatever way.

I wish you the best of luck, and hope you find a way to keep it at bay. Endo should be treated with much more concern in the medical research agenda (don't know as there actually is one of those!). I think it's ridiculous that something that isn't actually rare, and can often me debilitating, isn't being made a high priority. I bet if men were experiencing our pain and symptoms in their testicles it would be more widely known and a larger focus for progress. (I'm on a bit of a men hating rampage at the moment haha!) It is true though, medicine is still quite male dominated.

Thank you for your response, sorry I got off of topic.

Rhi xx

[Emma-louise in reply to Rhiann]

No its deffo worth having the op, just to make sure youve got it! It was such a relief to hear the news i had it - it sound silly, but just knowing i had something to answer to all of symptoms was nice.

I agree if definitely needs acknowledging as a serious condition. Its pretty obiovus that ALOT of women deal with this horrible disease everyday- and i know for me i find it hard saying that i have this disease as people don't seem to take it seriously - especially people close to me! Its disheartening!

Again, please let me know how you get on with your lap It'll be nice to hear a real success story so my fingers are tightly crossed for you Its also great (but not for you) to hear someone else suffering the exact same symptoms as me - so strange that mine have just come on in the past month too!

Please feel free to message me if you have any other questions!

Emma Xx

[Emma-louise in reply to Rhiann]

No its deffo worth having the op, just to make sure youve got it! It was such a relief to hear the news i had it - it sound silly, but just knowing i had something to answer to all of symptoms was nice.

I agree if definitely needs acknowledging as a serious condition. Its pretty obiovus that ALOT of women deal with this horrible disease everyday- and i know for me i find it hard saying that i have this disease as people don't seem to take it seriously - especially people close to me! Its disheartening!

Again, please let me know how you get on with your lap It'll be nice to hear a real success story so my fingers are tightly crossed for you Its also great (but not for you) to hear someone else suffering the exact same symptoms as me - so strange that mine have just come on in the past month too!

Please feel free to message me if you have any other questions!

Emma Xx

[Rhiann in reply to Emma-louise]

Hi Emma,

I've been quite lucky with the people close to me really, although there is the occasional raised eyebrow and moan that I can't make myself better even for my friend's birthday!

I will definitely let you know after the laparoscopy how I got on. Knowing me I will be back on here asking more questions. I'm just panicking a bit that they won't find anything, and then I will have no clue what to do, and people may start to doubt me a bit.

It was lovely talking to you, thank you for making me feel like someone gets it.

Rhi xx

[endogirl22]

Its a difficult one , i carnt afford private but really would prefer to go private, and its actually been mainly women that have treated me wrongly the specialist i got moved so quick he was fab, its difficult to give a exact time tho as the average time to get diagnosed is sometging like 17 years. Actually putting in a complaint on the grounds of negliance and id recommend the same to any one who has had same troubke the more of us to speak up then hopefully they will trust more women when they speak up xxx message me if you would ever like a chat xx

[Rhiann in reply to endogirl22]

I know it is a hard situation. Going private is so expensive, my mum was trying to say that she will sell the car to pay for the lap privately, but fortunately my specialist has been very good to get me in on a cancellation on the NHS.

Something definitely needs to be done about endo. I feel like more people should know what it is!

Thank you

Rhi xx

[Kjp1]

Hi, I'm awaiting a lap too. My symptoms have flared up like urs since August - so nearly three months. I'm worried as don't know what it is. Been A and E for today and sent away, went five weeks again too and sent away. Blood normal pelvis feel normal. I stress about what it could be too but they tell me not too. Easier said than done when u have these pains isn't it.

Mines the same- Varuna pain, leg pain, bum cheek pain, rectal pain, pelvic pain. Cervix feels like stiff cardboards up there- strange sensation- a gnawing pain.

Clear smear 12 months ago tho and getting another on 31 st.

Bloods ok at A and E.

I've sent a stool sample is gp too so awaiting those results.

I've had irregular bleeding n a heaviness for 12 months and havnt felt right for two years but only since August with sever pains that stop me from goin to work everyday and lead me to A and E and to taking cocodamol every four hours!!!

I want to know either way if it's endo or not but got to wait- got about 8-9 week wait so far and they won't bring it closer even if paid private. She said today to wait and take more painkillers- she will notify if a cancellation.

It's hard isn't it. The not knowing.

[Rhiann in reply to Kjp1]

I agree, the not knowing is in a way the worst part (unless it's a really bad day, then the pain is the worst). I think it's the fact that the symptoms are so random in a way, and so changeable. One minute I can feel almost normal, the next I can't walk! Makes you think that it could be something really weird and sinister, or that you are imagining it.

I'm sorry that you have to wait so long, but as our symptoms are almost the exact same I will let you know how I get on after the lap, what they found and if there's any advice for specific pain management for these symptoms. You never know something may be useful, or put your mind at rest.

Best of luck x

[Kjp1 in reply to Rhiann]

Thanks Rhiann please do. Goodluck to you too!

Yes I here so many stories about these symptoms being related to sinister issues and misdiagnosis and then you think an I just paranoid then? But then you think no the bleeds are real the pains real etc ... Then get angry cuz no one is helping just stuck in the system. I think perhaps it's just that sinister issues are publicised more than endo? We've got to have faith in others and keep grounded havnt we. This site is very good for that. Keep on plodding along. Have hope. Just gotta keep eliminating possibilities until find the answer.

Goodluck I'm sure you will be fine

[Kjp1 in reply to Rhiann]

Thanks Rhiann please do. Goodluck to you too!

Yes I here so many stories about these symptoms being related to sinister issues and misdiagnosis and then you think an I just paranoid then? But then you think no the bleeds are real the pains real etc ... Then get angry cuz no one is helping just stuck in the system. I think perhaps it's just that sinister issues are publicised more than endo? We've got to have faith in others and keep grounded havnt we. This site is very good for that. Keep on plodding along. Have hope. Just gotta keep eliminating possibilities until find the answer.

Goodluck I'm sure you will be fine

[shanevril]

Hi

[lillied]

Hi Rhi,

Your symptoms can flare up any time sadly but with youth on your side I'm sure your immune system is doing it's best!

With regards to your symptoms being stress induced- it's highly likely. Stress plays a heavy part in weakening your immune system and can lead to all sorts of other illnesses.

It also may be that you're pushing yourself to hard. It took me four years to be diagnosed and so it's hard to change your view of yourself when people have been telling you there's nothing wrong with you! The best way the body can heal is through rest. Because you are sick, you will need to sleep a lot more and as frustrating and confining as it can be you need to listen to your body when it's telling you to stop.

I work in the nightclub industry so I've suffered a few traumatic experiences myself. I've found the Red Cross to be really helpful. They're not allowed to give advice, just listen to you so you can get your feelings out in the open. You're at a time in your life when all your mates are doing wild things and making life changing choices while you can't get through breakfast without needing a nap. The more you talk about it, the more you'll be able to cope and as you can see, there're plenty of like minded women on here ready to listen.

All the best

Xx

[PintoS]

Hey Rhiann!

I know you posted this 2 years ago but I am curious of your progression or recovery? I am having the EXACT same endo symptoms that progressed very fast and I am 22 years old. I am super worried that this will progress further, as the sciatic symptoms have worsened. My gynaecologist wants me to try the pill for a month and see if my symptoms subside. Have you tried that?

Hope you're doing better any way!

Sarah xx

[AMancuso in reply to PintoS]

Rhiann,

I know that every woman is different, so this is just my story. But it was birth control that flared up my endo. I believe my body has been fighting it most of my life and doing a good job of it. When I got married we went on the Nuva ring for a year but then decided to get off of it because I completely lost my desire for sex. I was 27 when I came off the ring, now I am 28 and in the process of blood work as the first step before any type of surgery. My husband and I are using the Creighton Model to chart my periods and can use that at a certified Napro Technology Doctor. I highly recommend not going on birth control until after you try using the Creighton Model to see what your body is doing.

[Kate345]

Read stories online and on YouTube girls just getting sudden jabbing pains after a lifetime of pain free periods.. can happen any time, any level.

Some people have endometriosis and have 0 pain. It’s so crazy