Surgery to remove endo...

Hi ladies,

I had my diagnostic laparoscopy 4 weeks ago and have been told that i do in fact have endometriosis but removing it was not an option as there is just too much of it and it's all so 'embedded'.

Have any of you ladies been told this and then gone on to have the surgery to remove some (or all) of the endo?

I was also told by a not very nice doctor that my 'only hope is a hysterectomy' but as i'm only 23 they wont consider that until i've had children (which i don't) and am much older.

I'm just so confused about it all really and was hoping for some advice from anyone, especially someone that has been told the same as me. Finding it very hard to get my head around it all.

Thanks all xx

16 Replies

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  • I would definitely ask for a second opinion! I agree u are far too young to be having one of those and definitely not before having children.

    I was diagnosed with stage 4 after trying for a baby for a year. Was told by fertility consultant I would need to have the whole right side removed as it was so bad. Was referred to a specialist to complete the work and he said he could remove and repair! I'm now disease free - for now!

    Try to find an endo specialist x

  • First of all run away as far as you can from that dr!!!

    You may have something called deep infiltrating endometriosis. This is where the endo implants are deep and sometimes involve the bowel and bladder. To have surgery to remove them is not impossible but you need to be under a surgeon of the highest skill with colorectal/urological surgeons on hand to help if needs be. Many women with advanced deep infiltrating endo have successful surgeries and live pain free lives. If you choose the best surgeon!!

    The NHS recommends that women with advanced or deep infiltrating endo are only treated at 17 endometriosis centres in the whole of the UK. If you are treated at a recognised centre then you can be sure of the skill of the surgeon. Here is the policy that documents that. I would show this the your Dr and request transfer to one of these centres immediately england.nhs.uk/wp-content/u...

    Hysterectomy is conducted too readily due to lazy or incompetent surgeons. Losing your ovaries at a young age can have major complications. Many women who have hysterectomies still go on to have pain even afterwards. This is because endo may have grown and scarred other internal organs , such as your bowel or bladder. Having your uterus removed would only help with a condition called adenomyosis. If this is what you have then removal of your uterus would be the best option. Never ever let them take your ovaries!

    I am sorry you are facing such horrible news. I hope you feel better soon and if I can offer any more help please just ask

  • VERY useful reply. I've personal experience of having Deep Infiltrating Endometriosis; and I've had surgery for it. In my case, I had Endo deep in my Utero-Sacral ligaments. My Endo Specialist (who I had to find on-line, and demand referral to!), did a radical excision surgery. Alas, I still have symptoms. I guess it can work for some women - it all depends on how skilled the surgeon is, how well they work alongside Urology and bowel specialists, etc.

    The link you posted is one I've read, as well. I just find it a huge pity that more women aren't aware of such information being available. Most women with Endo - even very basic Endo - are left totally "in the dark". The lack of information and understanding is just shocking!

    I think most Doctors have very little knowledge of Endo. Even the ones that have come across it are still inclined to make errors, and believe common myths such as pregnancy "curing" it! I certainly think that many are not aware that different types of Endo can be present; both superficial and deep infiltrating exist.

  • Agree with the others, I had stage 4 everywhere, bladder, bowel, pod, ureters, hydro in both tubes, 18cm cysts and everything stuck together.

    Every last bit was removed by lap x

  • I had a horrible doc like that so I went for a second opinion although mine wasnt as bad as urs x hope u get something sorted xx

  • Hey I had a laparoscopy 4 days ago, and prior to my surgery they did tell me that if I had a lot of endometriosis they would just close me back up and reschedule my theatre slot so they had enought time to do everything. I do believe that a good surgeon will give you every option that would help preserve your fertility. Certainly when I was first saw them they told me removing things is the last option. Unfortunately I've just had to have my tubes removed due to blocked tubes but he assured me he wouldn't have done this had they been at all salvageable .

  • Definatly look at the bsge website at the specialist endo centres to find the one nearest to you then have a look at the team that work there. X

    Good luck. X

  • I was told the same even went to surgery to remove ovaries now waiting for specialist at Manchester you need a second apinion.

  • Hiya. I agree with everyone else. When someone is told this it is usually because the surgeon themself is not skilled enough to deal with the extent of endometriosis that they found. A hysterectomy won't solve it either. As the other ladies have mentioned you need to be referred to an accredited endo centre - you can choose which one so you might want to look into which one you'd prefer. There is a list of accredited centres on the bsge website bsge.org.uk Good luck ( & never go back to that surgeon again!!) X

  • Thank you all for your replies.

    I'm going to see my GP on Tuesday so i'll ask to be referred. Failing that, i'll talk to my partner about maybe paying ourselves to see a specialist.

    Thanks again ladies, means a lot.

    Hope you're all as well as can be. Xx

  • Oh, you poor thing! I can really understand where you're coming from! Believe me... I had over 9 years of being told pretty much nonsense before I even managed to get a correct diagnosis of Endo!

    I cannot agree more with some of the other replies here. You definitely need to drop that Doctor like a hot potato, and get out of there! A second opinion is a must! DO NOT ever feel you have to accept, put up, and stick with a Doctor who is basically rubbish - and is talking rubbish. As a woman with Endo, you need understanding, a good listener, support, care, and effective treatment... NONE of which this idiot seems to be offering.

    Like many women in this Forum, I had to fight for YEARS to get a diagnosis and treatment. That seems to be the case for lots of women with Endo. There is just so much ignorance out there; too few people know about the disease, and even Doctors can get it wrong. There are many myths circulating, and even Doctors seem to believe them! Things like "pregnancy cures Endo" (it doesn't); "hysterectomy is the only cure" (it isn't); "menopause cures Endo" (it doesn't); "you can get Endo as a teenager" (you can)...

    I was told for several years that my symptoms were "in my head", and that I had "normal period pain"! After fighting to see a Gynaecologist, I was then incorrectly diagnosed, so I had another fight to get an accurate diagnosis of Endo. I was told MANY times by my Gynaecologist that I needed to have a hysterectomy. I was also put in a position where he was basically asking me to choose between having children, and controlling my symptoms. NIGHTMARE!

    I ended up getting VERY annoyed, and making a formal complaint. I also did a LOT of research on-line, and found myself an Endometriosis Specialist, who I demanded a referral to. Since then, things have been better. There are LOTS of treatment options - NOT just hysterectomy (which should be a LAST RESORT only).

    You really do need to find yourself an Endo Specialist. There are many, around the country. here is the name of a website you can go to, to find the nearest one to you...

    bsge.org.uk/ec-BSGE-accredi...

    It might also help for you to read the following, which explains simply why it is a good to see an Endo Specialist compared to a regular Gynaecologist, as the latter often do not have an in depth knowledge of Endo...

    endometriosis-uk.org/seeing-endoemtriosis-specialist

    Other things you may find it a good idea to do, are things like reading up on Endo (there are LOTS of good and really helpful websites on-line). You can find out more about symptoms, different types of treatment, pros and cons of treatment, etc. A good site to start with is...

    patient.co.uk/health/endome...

    Try keeping a diary of your symptoms, to take with you to any appointments. Find out about "alternative" therapies - things that may not be available on the NHS, but could still help you. Some women use Chinese herbalists, others try acupuncture, or reiki... things like that. It is always a good idea to find out what your various options are; then YOU can stay in control, and pick and choose treatments that help you, and are right for you. Like I said, hysterectomy is a last resort, and NOT the "only treatment". If anything, you want to try and avoid such drastic things at all costs!

    If you are keen to have children at some time in the future, then preserving your fertility is important, and therefore you need to have a Doctor who understands this. Many Endo Specialists have a lot of knowledge regarding the impact of Endo on fertility, so again it is useful to see a specialist. They are also in a position to refer you for fertility treatment should you need it. Probably the BEST thing you can do, if you feel you may want kids in the future, is be open and up-front about this fact. You need to be able to talk with your Doctor about what it is that YOU want - about your symptoms, how you'd like to manage them, about your concerns, about your fertility. The more information you can discuss, the more likely (if you have picked a good Doctor) it will be that you can find some sort of treatment that works for you - and the more likely it will be that you can find out about any fertility problems you may have, and work on sorting them out.

    I'm sorry this is such a long post; only I really do feel like you needed some help, support, and information. I've not been able to cover everything - there's SO MUCH for women with Endo to find out - but I've tried to give you the basics. The good thing is that, now you have found this Forum, you have somewhere to come to and talk with other women who have Endo. We all share experiences here, and try to support each other. The more you use this site, the more you will find that you can discuss pretty much anything here. We've all had experience of Endo; we're all at different stages, and have different symptoms. It's o.k. to ask about surgery,bowel problems, bladder problems, infertility, painful sex, heavy periods... you name it, and if it's Endo related, it's probably somewhere on this Forum!

    So, I'm wishing you good luck and all the best. Don't give up on things, and don't accept the nonsense you have been told. Pick yourself up, and keep pushing for the RIGHT answers. Do a bit of research, find a Specialist, and get a new opinion. Like I said earlier, us women with Endo often have to fight for our rights. The tougher, more organized, and more clued-up you are; the better!

    AND... whatever ANYONE says...

    a) You are NOT a malingerer, a hypochondriac, or mad!

    b) You are NOT making a fuss, or being a nuisance!

    c) You are NOT imagining, or inventing symptoms!

    d) You know your own body, you know your symptoms - so you deserve to be listened to, and taken seriously.

    Hope something works out in the end...

    Best wishes & take care of yourself,

    Elaine. x

  • I had a doctor who asked me why I thought I was the only woman who had such terrible cramps—and this was after I had a lap! I never went to a male ob/gyn again! A woman doctor diagnosed endo immediately! I know not all male docs are like this, but most of them are not as sensitive to women as another woman might be?

  • Another thing ladies..

    I've not been told pregnancy cures endo, but just that it basically gives the woman a 9 month break for pain etc. I don't really know what to take with a pinch of salt and what to really believe at the minute (only from the doctors - you guys have been so so helpful!)...

    I've been told that my fallopian tubes are 'stuck' and 'embedded' behind my uterus. Anyone else have/had this? I understand that I may struggle to concieve and I may not.. But because of my tubes i'm told i'm at a higher risk for an ectopic pregnancy.

    I was wondering what your experiences with pregnancy and endo are?

    Thanks again. Xx

  • hi. I wad told my fallopian tube were blocked from endo and the only chance to have a baby was IVF.

    We had our one free go and we were lucky it worked first go. I remember the doctor saying having endo can help embryo stay put less likely to have a miscarriage. That was 6 years ago the pain has started to come back this year! :(

  • I was 31 when I had my total hysterectomy—after 12 years of not being able to have children because of endometriosis. One of my ovaries was like cement, and the other was not much better. The disease had to be scraped from my bowels and bladder, where it had spread. Having the surgery was the best thing I ever did! Took some time to adjust to the right amount of hormones afterwards, but that was not nearly as bad as the pain from the endo—I don't think much is (except maybe childbirth itself). Because of my age, the one concern my physician had was the 'emotional,' knowing I would never bear children, but I had known that before going in and had come to terms with it over the years, plus I seriously found that the loss of the pain I suffered overrode the emotional pain. If you know for sure you cannot bear children because of the endometriosis, I would suggest the surgery. I have never regretted it.

  • Have you looked into totally changing your diet? This is hard to do normally. But when faced with a worse alternative, it is much easier. Read books from people who ate differently, ignored the naysayers, got better, had a baby. They're out there. It might work for you, too. Best wishes!

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