Insides complete mess! Ivf to be or not to be? Advice very welcome!

Having had a recent LAP at a BSGE centre I have been told my insides are a complete and utter mess. Everything is stuck to each other inc bowel and some organs they can't even see! My appendix is also in my middle and not on my right! Their only option for me is a major op trying to separate organs, having total hysterectomy, removal of ovaries and tubes, bowel disection and stoma. The specialist said they haven't seen something as bad as this before.

But they know I have 2 frozen embryo's at an IVF clinic and have told us to talk to them ASAP to see if they will even let me go through with a IVF cycle and if successful, a pregnancy.

I am trying to get people's opinions, be it professionals or those with actual life experience of a similar/same situation so I can have as much info as possible to make a final,informed decision.

My concerns of even attempting to get pregnant with IVF is if my body could even manage? A "normal" women who has a pregnancy, her organ move to accomodate the growing baby. But how can mine physically do this if all stuck together? Will it mean a very painful pregnancy? Then what about the giving birth? But also how will having carried a baby affect my insides after the birth, will it cause even more problems? I know this is going on the pretext of having a successful frozen IVF cycle. I also still have some of the large mass on my right ovary the IVF centre wanted sorting out which the endo specialists couldn't fully remove due to being too risky and they couldn't get to or find my right tube with the hydrosalpinx. So issues are still there which I don't know will affect being able to have a IVF cycle or not plus will affect any pregnancy?! If any of that makes any sense.

I'd be so grateful to hear you thoughts or experiences in this.

20 Replies

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  • Hi Squidgy, wow you are so strong managing with all that pain. I hope you're not in too much pain after the laparoscopy. I'm afraid I don't have any professional or personal advice to give... Are you on the fertility friends forum at all? Might be worth a shot posting there... How do you feel about surrogacy? Would the nhs fund it given a possible hysterectomy? Sending you lots of love x

  • Hi skatty, firstly apologies for my delayed reply, had a rubbish few days. Thank you for taking the time out to reply to me bless ya. Yeah I have been struggling since puberty and am now 34 so been a long fight. I am on the IVF forum so may post on there. I must admit I am leaning more to surrogacy, but my husband isn't as sure. Dont know if it would be NHS funded or not. Got our meeting with the IVF clinic on 23rd Dec so hopefully find out answer to that question. Once again many thanks for your reply, much appreciated. x x

  • I'm not sure if this will help but for the giving birth part your uterus is connected to your cervix which dilated when you give birth, there's no way that they could be disconnected so giving birth probably won't be a problem. Uterine contractions might cause your bowel to spasm however you could have a c-section too which would prevent that from happening.

    A c-section would be a good idea though since you'd have a risky birth, judging by what your describing.

    Yes organs do move out of place when a baby grows, if they are stuck together it may be hard for them to move. Could you maybe discuss a laparotomy with your speacilst to see if they can remove things from each other? With a laproscopy they just have 3 holes and a camera but that way they have eyes and could have a few other surgeons. (I'm just guessing)

    Defiantly talk to IVF consultants.

    Hope this helps Xx

  • Hi hannah117, many thanks for your reply and advice. Apologies for my delay in responding, been not a great couple of days. Unfortunately the specialists have said there is no way they could do another operation even if via lapabotomy that would allow them to try separate things as they just too stuck and too risky. They really wanted to say they could do another op to separate things but said no way would it not end up being hysterectomy etc.

    It doesn't help that it not just endo related. I was born with a congenital neuroblastoma stage 4 all over my internal organs except lungs and heart. Back then all my organs were stuck together and the surgeons told my parents it was too dangerous to try separate them. So I have 34 years of adhesions and stuck organs.

    Got my follow up appt at IVF clinic on 23rd Dec, so hopefully get some more info to help with what to do next. Once again many thanks for your reply and advice, much appreciated x

  • A lot going for you and every stuck together. If the lining within the uterus good, just go for it. Nature has a way of working itself out. Plus side those tissues outside the uterus will not have the oestrogen to feed on so will shrink.

  • Thanks Claudnicole for your reply and advice, much appreciated. Apologies for my delayed response, been a couple of bad days. Yeah should help a bit with not having the oestrogen, but I also have 34 years of adhesions from a congentital neuroblastoma 4 I had when born. Once again many thanks for your info, much appreciated and all helps. x

  • Hi Squidgy,

    What a difficult choice. I know a bit about those and endo.

    I think try and break it down a bit. Have they said they can do the surgery soon?

    If you have frozen they won't do the whole pump you full of drugs thing, you will have only progesterone right? (I've only done one cycle). So you won't have issues with the oestrogen making the improvements made in surgery worse.

    So that's a possible reason for surgery first then cycle. Also something to hope for through the surgery.

    But a reason against ivf after could be the amount of surgeries you have had prior and if you might be thinking about a more radical surgery at this stage.

    Would this be a final cycle or do you plan to keep going if not successful this time?

    My decision is also tricky. I need to choose between countries, uk with support of family and some funding or elsewhere, where my husband can work. I've taken a break from work after a very difficult year or two. Kind of in limbo until I decide.

    I've read a couple of your posts before, I love your user name and I can tell you are a lovely person from your posts. Here if you want to chat.

    Star xx

  • Hi Star, many thanks for your reply, really appreciate it. Apologies for my delay to respond, been a couple of bad days.

    Yeah you are right that with using our frozen embryos I will not need go through the whole IVF process as if starting from scratch. But using frozen embryo has a less % success rate, plus cos of my body I would have to have the embryo injected through my womb wall under sedation which again reduces the % success rate. As we have 2 embryo's frozen in theory we could have 2 cycles. However, after almost completing one round and the reality of the actual process you go through I would see how cope with trying a frozen cycle and decide after that. But I know I would not do the whole IVF again.

    Sorry to hear you are having to go down the IVF route and done a cycle. It is a daunting thing isn't it and no matter how much you think you are prepared for it all, you are not. Quite a lonely process I found too as the man in life doesn't need be there for much of it and it is us women injecting selves, being prodded, scanned, poked about etc. Our bodies having the drugs and having to deal with it.

    Can imagine how tough for you to decide where to do the next cycle. I guess some of it depends on how supportive and helpful to you it was to have your family and friends around when you had your recent cycle. But also how happy and comfortable you feel with the IVF clinic you have been using. I wish you all the best for your next attempt at IVF whichever way you decide to do it. Don't blame you having time off work too as having deal with endo is bad enough, then with IVF roller coaster on top too just makes anyone crazy! The being in limbo feeling just drives you mad doesn't it as you want to make the right decision but so hard.

    I get the impression they would want to do the big, life changing surgery sooner rather than later. But I believe it would be a wait with their busy waiting list plus to co-ordinate a date the bowel surgeons can do too. But it is either IVF first then op, or no IVF have the op and never be able to have IVF after.

    Bless ya, you are too kind. I like to think I am a kind, lovely person and am an agony aunt for my friends, sister and dad...doesn't mean my advice is any good tho! But I like I can be of some use to them and an ear to listen. From your post I get the impression you are a lovely person too with a big heart.

    Once again thank you ever so much x

  • Hi Squidgy,

    Hope you are over the worst bit of the news. It always comes in waves.

    I think we are looking at trying and then once we have the IVF out of the way moving to further surgery. I will have a full hysterectomy and hope that it sorts it for a few years as I want to enjoy life!

    Thoughts..

    Either:

    It sounds as if you need to try the IVF, if it doesn't work then get the surgery done. Get everything lined up for surrogacy or other options as soon as you can after the IVF while you are waiting for the surgery.

    Or:

    Keep those little frozen beauties for a surrogate. They may have a better chance. (I don't say that to hurt, but it would be true with me as well with all the stuff I have going on in there.) Move towards getting your health as good as it can be by having surgery. Then moving forwards when you feel better after surgery.

    I think its the letting go that's worst. Most people think, I'll have a baby and then within a year they get pregnant and they do. When we get there think of how much we will value the experience, I think it will make it even more special.

    Would you consider adoption? We would but again that ties us to one place really.

    I hope you have a supportive partner, I'm lucky in the respect. I am also going to get a dog in the near future, not the same in any way as a child but I need something to share with him that I love. Plus I think it will make me happy.

    Let me know what you decide?

    Star xx

  • Hi, yeah one day I think I am getting over the news and dealing/handling it better, then like a wave it hits me again and I struggle.

    It seems so unfair and never ending doesn't it..as well as scary too knowing we have to put ourselves through IVF, whilst already struggling with endo, to then know that having another operation will be on the cards. Like you say, all we can do is cling on to the hope that eventually having the surgery will help at least ease the symptoms we suffer from and we can try to start living a normal life!! Although having a hysterectomy and being pushed into menopause I am sure wont be fun! Just no end for us hey?!

    Your 2 suggestions make perfect sense and are some of what is going through my head. I am bad health wise as it is and in some ways pleased don't have responsibility of a child on top of it too as wouldn't manage. So ideally would like to be sorted before have kids. But as IVF needs to be done 1st it may be that if successful I will have to cope with a child too and recover from the major op after whilst looking after a kid. It a no win situation. But yeh if IVF couldn't go ahead I would try get the op done sooner so hope to have some ease to what suffer with and then be in better frame physically to look after a child, be it via surrogacy or fostering/adoption.

    It is the letting go that is hard and if decide not to then hope not regret it. But, although sounds harsh, as it has been such a struggle I have had more and more time to get used to not having a child and trying to find the positives in not having a child ie no sleepless nights, no changing nappies, no looking after them when pooorly or sorting out their tantrums, disputes with other kids. That my husband and I could go away on holidays when we want, where we want etc etc that it is now hard to try think of the positives of having a kid as have so convinced myself mentally of not having one and why that wouldn't be a bad thing. But there are days where I do want one. Like I say it sounds harsh.

    My husband is a Social worker so he is quite keen on fostering. But I am worried about starting to get emotionally close to the child and then they are moved on. Not sure I could handle that. He is not as strong for adoption but he hasn't discounted it either. I think it is something we would look into if that the way it ended up. But I would need to have had my op before we do that as at the current state I am in, I wouldn't pass the health side of the application.

    Like you I am lucky ti have a supportive husband. I keep saying to him I am so surprised and he is crazy for not running 100 miles in the opposite direction! I know it is hard for him too, and I hate that he is being put through all this. Glad you have a supportive man too. Your idea of a dog makes total sense and something I have considered possibly in the future.

    Will let you know what happens and what decisions get made.

    I wish you all the best with your endo journey and IVF x

  • Thanks Squidgy, hope things go well for you. Thank goodness for the internet or I think ladies with this condition would find it hard to speak to those with similar problems. Keep in touch. xx

  • Very true, sites like this are a lifeline to us sufferers and make us not feel so alone and it all in our head! x

  • Hi, I have stage iv recto-vaginal endo & my first lap a few years ago, identified my ovaries were stuck to my anterior wall. I had diathermy ablation for extensive bladder & bowel endo as well as having cysts & endometriomas removed. Although I was assured the endo had been removed, I now realise only excision rather than ablation is a solution. Whilst I did have some temp relief after the ablation & even fell pregnant naturally after years of ttc, I had a miscarriage at 11 weeks. Then, my endo pain returned more severely too.

    After getting better educated via the endopaedia.info website & the excellent education group "Nancy's Nook" on Facebook, I researched excision surgery. I asked for a specific referral to a particular surgeon rather than my nearest BGSC centre because not all practice excision & because of my bowel & bladder complications.

    Best decision I ever made & just 3 weeks post surgery my pain is gone. I had my ovaries suspended, a bowel resection and endo excised from my bladder & ureter as well as pretty much everywhere else. My fused organs were separated as well as the many carbon deposits left behind from ablation, which had created a hostile environment for any potential pregnancy.

    I can't comment on the IVF aspect, but hope you can get a second opinion on the hysterectomy suggestion as I remember that being floated with me, although it still wouldn't have dealt with my bladder/bowel endo. Excision is the gold standard & I suspect there are actually very few skilled surgeons in the UK fully equipped to undertake specialist surgery as so many seem to use ablation and excise only superficial layers of endo.

    Hope that helps & good luck.

  • Hi birchshei, thank you for your reply and advice, much appreciated. Sorry for my delay to respond, had a couple of bad days.

    Sorry to hear you have been having a struggle and so pleased that you have found someone to help and so far you are feeling best you have done and recovery from your op is going well. I will take a look at the website you mention.

    Once again many thanks and I hope your recovery continues to be good x

  • I think your own instincts about a difficult pregnancy and birth are very well warranted. It sounds like you will have had severe endo a long time and the adhesions involved will be fixed and dense. I can't claim any expert knowledge but I would be thinking along the same lines if it were me. Will your uterus be able to grow as it should? - it does sound unlikely and I have come across others having very painful pregnancies when such adhesions are involved. But if the uterus cannot grow properly what effect may this have on a growing foetus inside? It has been said that your cervix won't be affected but I imagine you will probably have severe rectovaginal endo which would mean that you cervix is glued to your sigmoid colon with adhesions so it would not be able to dilate. The cervix does so by means of a circular muscle so if a section of it is non-functional then this will affect dilation. On the subject of the endometrioma, the guidelines are that they should be drained in the case of IVF rather than excised so that in itself may not be an issue, but you clearly do have a very complex case and I feel you need many, many heads to get together to discuss your best options. Depending on which BSGE centre it is you may need a second opinion and I would search out the top fertility specialists too and not proceed with anything until all your questions are answered.

  • Hi Lindle, many thanks for your informative reply. Much appreciated. Sorry for my delay in responding, wasn't ignoring you just been a few bad days.

    Yeah my pouch of douglas is totally abliterated with endo so that makes sense what you say. Like you also say, due to the extent of adhesions and all that is involved they are very fixed and dense. It is not helped that I was born with a congenital neuroblastoma stage 4 which covered all my internal organs apart from heart and lungs. Once the tumour itself had gone, and the surgeons went back in, they told my parents then that scar tissue was still holding all my organs together and they couldn't separate any as too risky. So I have had 34 years of adhesions and things stuck together with (since puberty) severe endo on top of it all! The endo must think it is living in disney land with all the adhesions to cling to and feed on!

    I saw my GP last week who said herself she has never seen someone like me and in her opinion would imagine that a pregnancy would be painful for me. She says I am a complex case as do the specialists at the BSGE centre.

    Like you say and what I plan to do, is get as much information as I can, as many opinions as I can before making any decisions.

    Once again many thanks for your advice and information, it is greatly appreciated and a big help.

  • Don't worry Squidgy!!!! AT ALL!! I too was exactly like you(and didn't even know!!!)

    I had a laparoscopy in the summer and they saw things were REALLY bad, so they did total excision in September and ITS ALL GONE!!! My body is back, I'm bouncing around. Felt better wishing a day or two after the op. It's keyhole so is totally fine. I don't know why people on here say it takes months to recover!? You're better within about 3 days..

    The surgeon showed me pics of my insides before the op(EXACTLY LIKE YOUR STORY) and after the op.. No adhesions at all. Please don't worry. Everything will be ok. I've never felt better, and we are now trying for a baby as the surgeon reckons it can happen naturally:-) Keep believing... Message mdid needs be.. Or anyone else who has questions! We are all in this together girls xxx

  • Hi AlannaMac, thanks for your reply, much appreciated. Sorry for my delay to respond, been a few bad days.

    I am so pleased to hear that you have had some success with your surgery and recovery was quick for you too. I wish you all the best with your family planning and hope it does happen naturally for you.

    I can't have the big,risky surgery until I know what IVF clinic say and if decide want to try get pregnant with our frozen embryo's. This is because the next op will take away any option of having kids full stop so need know if can or want to. The Endo Specialists were fab and really supportive, sympathetic and apologetic that they wouldn't be able to try do an op to separate things and save having hysterectomy etc, cos if they could they would offer it and do it. As last thing they want to say is they can't. Like you, I got to see pictures of my insides that they took..so interesting and helps to make sense of it all more doesn't it.

    Once again many thanks and so pleased you are doing well.

  • If I had my time again (I'm 42) and was told at an younger age that I would never have a pregnancy due to my Endo and other issues I would 100% use a surrogate. At the end of the day all your doing is using the surrogate as the host.

  • Hi sunnygirl1974, many thanks for your reply, much appreciated. Sorry I have taken a few days to respond, been a difficult few days.

    Like you say if they could tell you sooner that you are going to have problems with pregnancy etc then could be a little more prepared. Be it trying earlier naturally to get pregnant to then know if need fertility investigations and to know where you stand with it all and options available. I am 34 so technically in biological terms becoming an old woman!

    I must admit I am leaning more and more towards surrogacy with our embryo. Don't get me wrong it would be gutting to know that I would never experience what it is like to have another being growing inside of me, but for the sake of how my body is it makes sense. Plus no stretch marks! hee hee! But I do worry that I would feel apart from the process in some aspects and how deal with that emotionally.

    Tell me to get lost, but how did you manage to reach decision not to have children? Have you fostered or adopted? If so how does that feel? My fear is I will regret deciding not to have kids, especially if surrogacy doesn't happen as my husband not too keen on that.

    Once again thanks for your reply x

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