Worst news ever?!

Hi all,

I had a laparoscopy a couple of weeks ago and have been told I have stage 4 endometriosis, I am 29 with no kids and have been told that I need a bowel resectioning and she is pretty certain I will need a hysterectomy, I am not anatomically correct apparently!! I just feel numb about it and feel like a let down to my family especially my husband, I just don't know what to do!

24 Replies

  • Hi sam

    I understand what you are going through i found out that I to have endometriosis just a year ago. I went through all the treatments to slow down or try to stop it from growing i did the hormonal treatment anti inflammatory laproscopy. .etc. jusy a few days ago i got really sick throwing up because pain was so bad until i passed out. Today I had a follow-up with my gyn and was told my options and time has ran out... the treatments didn't work and the endometriosis is fusing all my organs together i felt lifeless numb like my world has crashed down on me. He insisted that I have the hysterectomy asap but was told that if i want to try to have a baby there is a procedure called the "clean out" at least that is what he called it now like i said before i understand how you feel im 25 years old and going through a divorce i do have one baby girl that is 3 she is my everything but always wanted a big family ,since i got the news every thing is falling apart my divorce is emotional enough now i cant have a future family nor am i im any situation to just try to get pregnant so i feel my life is at a stand still having my little family fall apart now my hopes and dreams of my future family just shattered im so sorry you are going through this but you're not alone please don't give up there are many options for you try doing reached before the hysterectomy! Good luck to you and your family

  • Hi, I am sorry to hear that a divorce is hard enough, I know from experience! I have been told that it is so bad that there isn't really much else, she couldn't even see most of my organs due to the endo. I was supposed to have a coil fitted and dye put through to confirm any blockages but they couldn't do either because it is so bad xxx

  • I am so sorry you have had such distressing news but you definitely need to read some of Lindles stuff on this forum. As a stage 4 sufferer at similar age also with no children i can relate and hysterectomy had come up in previous talks with my general gyn however i have since learned that hysterectomy isnt a cure for endo.

    Are you being treated by an endometriosis specialist?!


  • I am just waiting for an appointment with the specialist. Apparently the hudterectomy will only work if they take the ovaries as well and not just the womb and cervix xx

  • Well dont lose all hope yet. As soon as I saw my specialist the whole concept of hysterectomy was scrapped. I would double check on Lindles page whether the specialist they refer you to is registered as an endo specialist as the difference in prognosis between general gyn and specialist is huge

    But the most important thing to remember is that you are in NO way a let down to anyone and the people who love you will want you feeling better more than anything else xx

  • Thank you, that's all they keep saying but it breaks my heart as my husband has always wanted a family and I thought we had gone through the worst when I miscarried about 18 months ago!! He is a registered specialist. To be honest the thing scaring me at the moment is the bowel resectioning xx

  • Gosh I am so sorry, that is so horrific to go through in itself let alone with all this on top.

    But honestly the gyn people give such negative suggestions when it comes to treatment. Then the specialists come along and go "here are your options!" it is a different world, where they know that endo isnt a black and white condition.

    I shall keep everything crossed for you. But dont lose all hope over this till you see the specialist.

    Is the bowel resectioning definite?! I had to have bowel treatment but they managed to remove it all before needing to resec the bowel. Apart from the unplease drink that makes you empty your bowels mine wasnt too bad but i am afraid i dont have a frame of ref for resecting. But i have heard alot of success stories. xxx

  • The resection is 100% definite xx

  • I am now 4 weeks post op from a laparoscopy that initially was to investigate what was causing me almost constant pain, nevermind the mood disorders I was suffering with. I have endometriosis but have not had my follow up to be told the stage etc. I'm also 29 and I am finding it hard to cope with. I had my first period which was HORRENDOUS! But I have found a book called the period repair manual, I'm going down a natural treatment and repair route, I already ate the way the book states, no alcohol, sugar, gluten etc but now going onto a course of supplements. I'm so afraid it will come back, but I want something done about my painful heavy periods!

    Thanks for posting this as it's comforting knowing someone the same age as me is going through the same, hope the book helps!

    Good luck

    Lucy x

  • Can I ask what classifies as stage 4 as I've been told nothing about mine as of yet


    Lucy x

  • Basically she can't see anything as it is all covered in endo, my ovaries are also stuck together on the right side which apparently automatically makes it stage 4. I have been told my organs are obliterated and I am not anatomically correct, it would be near impossible for me to get pregnant but if I did it would be dangerous for me and would result in a miscarriage xxx it's not pleasant xxx

  • Hi Sam

    I have stage 4 Endo with rectovaginal. Involvement , obliterated pouch of Douglas, both ovaries were stuck to the back of my uterus and uterus stuck to my bowel.

    These were operated on so I could then carry on with my IVF treatments.

    I would definitely visit another doctor for their opinion just because your DR doesn't think they are up to the job, another one may be more skilled and be able to preserve your options for IVF in the future.

    Try the BSGE website for DRs xxx goodluck don't give up

  • Firstly is she a specialist in endo?

    Did you go to a endo treatment centre?

    If not that is what you need as they have endo specialist bowel & urologist who work together.

    What area do you live in? X

  • I live in Kent, I am being referred to an endo specialist but my gyne has been amazing, she knows what she is talking about and has been so so helpful, glad I get private health care from work as doubting would get this treatment through NHS xx

  • Hey

    You are exactly like me - I have stage 4, aged 28, no kids and need a bowel resection.

    I'm going through my second fertility treatment.

    It takes a while to accept it and I've had a year of this BUT I always try to think of it could be worse; we could have terminal cancer or something to that effect. Sure it is a life impacting disease but we are here and fighting it - I know this statement may seem somewhat flippant to you at this point but we can't change what's happening to our bodies but we have control over our thoughts - that's the last thing we have hold of.

    My bowel surgeon has recommended that a resection is done after I have completed all fertility treatments as it is too big of a surgery to get down and it's too risky from a fertility point of view.

    Hysterectomy as someone said above doesn't cure endo.

    I'm on no tablets at the min due to treatment and currently siting in bathroom with pains and I do feel angry but I have my trusted heat pad to kind of help me.

    Send me a private message if you need anything or want to chat xx

  • Thank you so much, I am trying to keep positive. They want to do the bowel resectioning pretty much straight away as it is spreading quite quickly. She has been doing the ops for 15 years and said it is one of the worst cases she has ever seen. Are you sure you don't mind me private messaging you? Xx

  • Of course - happy to help :-) xx

  • Hi o was diagnosed at age 30 with the worst endo my specialist had ever seen. Not sure I'm allowed to mention names on here but this was by a top end specialist in Guildford. I had to have bowel resection and v lengthy surgery - 3 hours and was in hospital for couple of weeks. It was everywhere, organs stuck together etc. following a couple more laser surgeries and one to remove adhesions we had Ivf and now have 2 kids. Not sure if this helps but i would say get second opinion from really good endo specialist. Happy to give you details of mine privately. good luck

  • This has given me a bit more hope!! I am worried about the ovaries being stuck together xx

    The bowel resectioning is scary because I don't know what to expect x

  • Hi,

    I feel for you, I had a lap back in Nov with told me I had stage 4 endo which was attached to my bowel and one ovary and tube are obliterated and the other hidden. I had an mri back in January to find out the amount of damage to the bowel so they could tell if I need a re section. Today I get the results.

    I too have no children and I was planning on starting a family with my husband. I have been very depressed, started taking anti depression tablets and waiting counselling through a referral to time to talk. I understand your feeling of hopelessness. Anything I can do please feel you can talk to me. Much love x

  • I found the infertility aspect the hardest to deal with and really feel for you both. I pretty much lost hope and couldn't face anyone with kids. But I would say try not to lose hope as the future is unknown. Re bowel resection I emailed my surgeon a whole load of questions before the surgery because like you didn't know what to expect.

  • Hi, I won't go into my whole story here but like you I had a diagnosis of Stage IV endo with dense adhesions. Endo pretty much everywhere. I have also had two bowel surgeries as a result - including a resection (I had something like 8-9 inches out). At the same time I also had bi-lateral ureteral endo which was affecting one of my kidneys. That was a 6 hour op - but it had to be done. So, I am happy to chat if you have any questions about the resection - or anything else. I did shop around for a specialist. I 'interviewed' 3 ;-). Ultimately, I did not have a hyst. My choice. In fact none of the specialists I talked to said it was absolutely necessary despite the severity of things. My original guy was adamant that it was necessary - he was a fertility specialist and his profile indicated that he specialized in endo too. However, it eventually turned out that whilst he was very skilled in some respects, he was not technically as good as others when it came to Stage IV etc. I have not ended up with kids - so I can't offer you a happy story there - but... I was older than you when my major surgeries happened. You may yet have time on your side. The most important thing is to get the right surgery for you - whether that is a hyst or not. Also important that you have someone working alongside a good bowel surgeon. PM me at any point if you want - If you do - don't think I have forgotten about you if I don't get back till the eve or next day. Good luck either way.

  • Depends what you mean by not anatomically correct! From everything I've read here and elsewhere a hysterectomy is not a cure for endo. I would first of all get her/him to thoroughly explain their reasons - draw diagrams, show you the pictures from your laproscopy so that you completely understand. Then get a second opinion. This is not an operation you should go into lightly and you deserve as many opinions as it takes. Don't let them pressure you. I was told that a hysterectomy was my best option too, but said no straight away.He nearly fell off his chair, but then miraculously found other options to offer me. You have to understand everything that's going on in your body and make an informed decision. Also, make sure you are being treated at an accredited center - if you search for that term on here there will be a link to a list of hospitals.

    As I'm sure your family and friends have already told you, you are not letting anyone down. Your body may be letting you down, but this is the begging of fixing it. Good luck. X

  • I agree with everyone's advice- especially getting a 2nd & 3rd opinion!!

    You are not letting anyone down- but I've been there too & it's a lot to take in & it's bloody horrible & unfair & you have every right to feel upset...I also agree with taking control of your thoughts, as another lady said, and there are so many option for fertility? So don't be told, or take a hysterectomy treatment as the only way, educate & seek out other options first, if that's what's right for you x x x you're not alone & I'm also here if you ever want to chat x x x x lots of luck x x x x

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