Stages of endo

Hi everyone, this may seem like a really silly question but how do you know what stage you are? All I was told when I woke up from my lap was that I had 3 area's of endo removed. When I asked what's next I was told nothing. I'm a little confused because until I joined this site I didn't know there were different stages.

Hope this question isn't too silly.

:-) x

20 Replies

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  • I've hadank hank you for your reply. :-)

    Can I just call straight through

    To the hospital then to make an appointment or do I have to go through the Dr's to get another one. I literally got told my consultant didn't want to see me again. So I never really knew what I was meant to do.

    How many stages are there? Is stage 4 bad? You'd think I had only just got this wouldn't you. I just haven't got any info

    At all and some of my hospital notes never made it back for me to find out all the details.

    I had more answers on here in 3 days than I have in 5 and a half years. (And they are quicker!)

    Thank you :-)

  • I've had a similar experience. I was discharged without anyone explaining to me what they'd found or done during surgery (except for the anaesthetist popping by and mentioning that they did have to do quite a bit of lasering). The first definitive info I got was when my post-op letter arrived stating that they found endo underneath my right ovary "and on the left with bowel adhesions" and that they'd treated the endo. I've had no explanation of how much they found, where on the left it was (from the letter, I suspect it was on the left ovary), what to expect next in terms of pain or - more crucially given they were aware that I want to conceive and the letter even told me if I haven't conceived in a year I may require referral for further treatment - whether my fertility might be affected. I rang up to ask about whether I should have a follow-up appointment, and I was told "nope, we don't need to see you again".

    It's been two months since my op, and I still suffer from constipation and chronic fatigue. I now get more minor, "nagging" pains most days out of the month (worse around ovulation and after eating). The first period after the op was fine, but then the next one was rather painful, and this most recent one was extremely painful. I'm already back to having to take days off work again, and based on previous experience I think I have another two months before I'm back to the excruciating almost-passing-out pain that landed me in A&E last time.

    My GP has already referred me for an ultrasound based on the pain I get after eating, but I think I'm going to go back to him and say that I want to be referred to one of the accredited clinics. Even if it's just one appointment to answer some of the questions that the hospital didn't answer and my GP can't answer.

  • Hi divadellarte, your experience sounds so simular to mine. I was told as well that they didn't want to see me again. It makes you feel quite alone doesn't it? It's been a year since mine and the notes from my op seem to of disappeared. But I've noticed in the past 6 months things returning. The niggling pains, being so tired. Etc. It's just so tiring going back and forth to the Dr's. I hope you get the answers you want about your fertility when you visit the Dr's. :-) thank you for replying. :-)

  • It is a question that is often asked - and there are two ways of staging endo.

    In the USA and rest of the world stages are usually 1 to 4 and sometimes 5, but 5 is covered by 4 anyway so it's just the Americans wanting to be more dramatic about things.

    In the UK they use words instead - Minimal, mild, moderate and severe instead of the numbering system.

    In each case there is a clear divide between stages 1-2 and 3-4,

    Stages 3and 4 (moderate and severe) will always apply when you have endometriomas or chocolate ovarian cysts, regardless of how much other endo is found or where it is located.

    Stages 1 and 2 (minimal or mild) do not have these cysts as part of the types of endo inside.

    You can still be riddled with shallow endo on just about every surface -but without cysts the highest grading will be stage 2.

    Staging has more to do with the complexity of the surgery needed to remove the endo than what the patient experiences in terms of pain and complications. It is more to inform surgeons than us as patients.

    Most gynaecologists in their training will be able to tackle stage 1 minimal endo surgery without any specialist additional training, and that is the bulk of endo surgeries. These types of endo can be successfully treated using diathermy and lasers.

    Stage 2 mild - will include adhesions and scarring in addition to deeper lesions of endo that may require excision surgery to remove. These surgeries do require a higher level of skill - but a lot of surgeons with decent experience behind them can tackle these ops too

    Stage 3 moderate will include cysts and may include adhesions and scarring too.

    Stage 4 severe is cysts and scarring and adhesions and deep infiltrating endo affecting the POD or pouch of douglas which is the gap behind the uterus and infront of the bowel and

    this is what is called RV endo or rectovaginal endo...

    there is another pocket space in front of the uterus between it and the bladder and endo down in there also can require endo specialist surgeons too as can endo on the ureters (tubes from kidneys to bladder)

    The severe stage ops are best referred to accredited endo centres as they will usually require a team of surgeons - specialists in bladder and bowel as well as the endo specialist gynaecologist.

    IF you were not told that you were found to have adhesions sticking your organs together and didn't have cysts - then most likely you are stage 1 endo.

    If the endo is treated by lasers or diathermy to burn it back - and that turns out not have been a deep enough treatment to remove all the endo then you'd jump to stage 2 as that requires excision of the endo lesions to remove them.

    I would add that the staging has no relation to the amount of pain you are experiencing.

    Just one or two patches of shallow endo can be a darn sight more painful than someone at stage 4 severe with endo all over the place.

    The pain levels depend on where the endo has chosen to nest. If it is on very sensitive nerves then boy will you know about it, if it is on no sensitive nerves but the bleeding from endo lands on tissue which is highly sensitive and causes inflamation and irritation then again you will know about that screaming at you each month.

    It is these irritated sites that cause the growth of a cushionof protection called adhesions to start growning and once they start they don't stop - they are very sticky super glue stong as their name suggests and they can stick organs together - they can grow round tubes inside and outside like a corset strangling them (a problem for bowels and vagina and cervix and ureters) and even if all existing endo is removed -and doesn't return - the scarring and adhesions can cause probles of their own for the rest of your existance. You cannot stop them growing as they are part of the body's way of protecting itself from harm, but they can be cut back from time to time.

    Bit like cutting back a bramble bush to the ground- the stuff will grow again in all directions eventually.

    After your op - if all the existing endo was removed then there is nothing more that the surgeon is needed for so the next steps are between you and your GP.

    Managing your periods either reducing the number you have each year from 13 to 3 or 4 by taking BC pills back to back for 3-4 months at a time is one option.

    Best is to stop them altogether - and for that your have options

    Nexplanon the arm implant will give up to 3 years of combines contraception and in most cases will stop periods completely after 4-6months.

    Mirena Coil or the new slightly smaller version Skyla are ones that are inserted in to the uterus and left there. Again they take 4-6 months to stop periods on average.

    The Mirena lasts up to 5 years and the Skyla up to 3 years.

    Or you can carry on with regular birth control pills which should lighten your periods and keep them regular.

    The risks are that having periods after a surgery can mean than endo cells may escape from the womb by floating along the fallopian tubes in period blood that is backflowing in the wrong direction instead of all escaping through the cervix and vagina in to the outside world.

    It is just one of a few theories on how endo can shift around the body. And one you can do something about. There are other ways - like in the blood stream etc but you can't do anything to stop that.

    So while it may not be 100% effective at preventing new endo, it certainly will reduce the chances of it relocating - especially to the ovaries and that is critical for your future fertility.

    Endo cells washing out of the ends of fallopian tubes are going to hit the ovaries and ovarian fossa as their first targets to hit. If they do nest on or near the ovaries that is a potentially big threat to fertility.

    so stopping periods is the best course of action after a surgery unless you are headed straight in to baby making with your partner. There are lots of variations of hormones to use to reduce and stop periods and they won't all suit you, so it can be a journey of trial and error to find what works best for you with the least unpleasant side effects.

    For me mirena coild was the best option - no remembering to take pills each day -just forget its there. noperiods, no period pains, no PMT, no ovulation pains or bleeds either.

    Saves a fortune on tampons or towels too and best of all give back so much time.

    If you have heavy periods taking up to two weeks of symptoms of every month - then you get back 6 months a year period free. It might be only 3 months extra each year with normal periods - but well worth it at that.

    No carrying round spare changes of clothes - cancelling social engagements, sporting clubs or any of that. you do get your life back.

    So those are your main options - you can research them online before discussing them wither with your GP or the family planning clinics. They are all free in the UK because they are also contraceptives - but we endo ladies use them for menstrual control pusposes primarily. They are all reversible in that you can stop the tablets or have the arm implants removed or the coils taken out in the event you want to start baby making. But for all the time not spent baby making then this is your long term way to try and prevent new endo forming.

    You can still feel the effects of having endo - like chronic fatigue, when all endo is removed.so surgery and the long term period stopping are part of the journey in battling endo.

    If over time you feel that the endo is returning or there are other complications such as cysts, adhesions or struggling to get pregnant then go back to your GP and ask to be referred to an endo specialist gynaecology surgeon with a view to having another op if required.

    For periods and painkillers it's between you and your GP to determine what you want to try next.

    If you opt for the mirena or skyl coils and you find smears or sex painful in the vagina then you must ask your GP to refer you to the local gynae clinic at hospital to have these inserted under anaesthetic. They will be painful to get put in if you do suffer pains in the vagina or cervix from the endo and you are entitled to have the procedure done while you are knocked out.

    all the birth control pills,arm implants and coils have their own website and you can also google the name of the drug or gadget along with 'patient information leaflet' to see and read their inserts from the drug packaging so you can read up on them before deciding which to try first.

    I would advise whatever you do try - to give it a few months to settle before swapping to something else, unless you do have a particularly bad reaction. it my only take a slight adjustment in ingredients or dose to find one that suits you much better so revisit your GP to try something else rather than give up thinking they will all be the same - they are not.

    Mirena and Skyla are the lowest dosed options - only about 20% of the dose that BC pill would give you if you do react badly to hormones. Very best of luck. The results of your op are really promising, which is great news to hear.

  • Great post! X

  • Wow! What a fantastic answer from impatient, loads of useful info. I've just had a Mirena coil fitted and wish I'd known I could have asked for a general! It was never offered even though they're aware of my endo and how painful it is. The fitting was so painful I almost passed out.

  • You are entitled to ask for anaesthetic/pain relief for ANY checks or procedures that involve the vagina and cervix if you do get a great deal of pain when having them done. It is not publicised - because the NHS is paid bonus payments for all procedures done without anaesthetics - which is soooo wrong in my view. Patient comfort should always rate higher than insentivising medics to cause hurt in return for a cash bonus. It is an outrage but now you know - so be sure to insist on your rights for all future procedures down below.

  • sooooooo i have 2 cysts one 3x3cm and one 8x9cm, i have stage 3 or 4 then?i haven't had my lap yet :(

  • Hi, sorry to be a pain, but I read your reply and now I'm intrigued. I had a lap in 2011 because I had a cyst on my ovary, when they went in they found I also had endo. I have since had the pain return and my new gyno is saying the endo was 'minor' despite me having chocolate cysts and endo on my pouch of Douglas? I'm confused x

  • I have stage 4 severe endo but I don't have cysts. Mines more to do with location

  • 3 doesn't sound too bad, its the area covered too, I have stage 4 and endo on bladder/bowel/ureters/pod/sacrial ligaments, 2 blocked tubes, everything stuck together and had an 18 cyst! If it affects tubes and ovaries its often 4, you should get a post op review to ask questions and I got a letter sent with the surgical report

  • Hi, sorry of this is a wierd question but where are the sacrial ligaments? Is it the same as the sacroiliac joints? To explain, I have endometriosis, but I also have problems with my sacroiliac joints and I'm wondering if the two are connected? Thanks

  • My understanding is they are the ligaments at the front that stretch during pregnancy, I could be wrong though? X

  • Ok, thank you for replying x

  • This sounds like what I have. I suffer badly with left hip and si joints. Also have trigger points internal

  • My doctor doesn't use stages. I think they are an American thing? She told me I had severe Endo which seems to equate with stage 4

  • cakegirl,

    I had my lap 6 weeks ago. I didn't really even talk to my Dr. immediately afterwards. I had a 2 week check up and he explained that I had stage 2 and 3 spots. From what I understand, the higher the number the more problematic it can be to the organs it is growing on. I would call the surgeon that did your lap and ask them directly.

  • Thank you so much for all your replies :-) you've all helped so much x

  • I don't believe there is such a thing as a silly question, I had 3 laps and then a total abdominal hysterectomy, and only on my third lap which occurred only a year after the second was I given a rating or degree of endometriosis which was the lowest scale. However I question why someone who may have stage 4 have may have less pain then someone with only a few sites. I suffered greatly and didn't learn about my adenomyosis until my pathology report after my hysterectomy. That should have warrented a stage 5 or higher in my opinion. Also adhesions and ovarian cysts can certainly make you question why you feel like your not being treated like a patient of high significance. If only the doctors could measure the pain you're experiencing, and prioritize your surgery dates accordingly. I suppose if I didn't find it completely debilitating and could have waited it out it may have been a greater value. Just like ovarian cysts some women have them the size of football's and don't even know, mine are small but are wrenching, should that make me less of a priority. And what if the've existed longer, doesn't that make them of higher risk for malignancy? I realize this was of no help but I hope it made you feel less alone in your question.

  • There's no such thing as a silly question when it comes to health conditions like this. It is a thousand times better to ask a "silly" question about it than assuming.

    As far as I've been told, the stages are decided upon based on how much there is, where it is, and how likely it is to become cancer, but again, that's just how it was explained to me.

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