Had my lap done yesterday still really uncomfortable how long does it take to recover... got 3 cuts? I'm completely beside myself... my consultant came round and spoke to me after and said i had severe endometriosis he removed as much as he could but my bowel and uterus are fused together and so he didn't try to detatched them as he was worried of damage and i would end up with a colostomy bag. By this time i was crying and asked would i ever be able to have children and he said as many as i want my tubes and ovaries were fine, but the more i read the more i don't feel as positive. i know im going to have to have more invasive surgery to detatch my organs i just don't know what to think about the whole thing, and i'm utterly devastated. I'm 23 just moved out with my boyfriend and about to start uni to be a midwife and i feel so guilty he now has a broken girlfriend with the possibility of never having children and he said it's fine there's other ways he just wants me better but what 23 year old guy wants to be put in this situation. In all honesty i just don't know what to think about it all and im so upset xx

24 Replies

  • Hi

    I had a lap last week and got the exact same news. I was so upset too as I had a lap about 4 years ago and they were able to remove everything they saw but this time they couldn't do anything. I am a bit older but we got married this year and I just felt so sorry for my husband that he now has to deal with the prospect of more complicated surgery and the longer recovery time. I keep telling myself that it could have been worse as at least I have the ovaries and tubes as many people are not that lucky. And although there are horror stories you have a good chance of still having children if these are still relatively untouched. I am sorry I am not being very comforting but I just wanted you to know that there is someone in the same boat. I would recommend a support group as although it is great on here, it has helped me meeting people that are going through similar. As for your boyfriend, be honest with him about how you feel, I didn't give my other half enough credit and was worried he would regret taking me on! But he is amazing and I am sure your boyfriend will be too. Try to keep positive, I know this is difficult but otherwise it can seem too much to deal with. I see my specialist in 5 weeks to talk about the bowel removal (a lot of mine is fully fused so will have to have some removed) so trying to keep my chin up until then. The pain from the lap will only last about a week, please message me if you need someone to talk to.

  • Sorry for the late reply! reading these replies really helped me not feel alone! I don't have my appointment with my consultant until October so I don't know how much of my bowel is fused. I'm sorry to hear about your story... did you have any treatment after your first lap? Fingers crossed you next op goes well :) I took your advice and have been talking to my boyfriend hes been really supportive, i know hes really worried but it helps talking to eachother and hopefully it bring us closer together! The pain has gone now thank god!! never felt anything like it! xx

  • Sorry to hear your news. As for feeling broken and worried about having children, I feel exactly the same. It's the most natural thing on this earth to have children and i feel a poor excuse of a woman if I can't. sending you lots of love and positive thoughts xxx

  • Wow, your message really touched me as it could have been written by me!... I feel exactly the same... Xx

  • Hey, sorry for the late reply... i just sort of wrote how i felt! if you want to chat message me whenever hun x

  • That's exactly how i feel!!! feeling more positive now i've recovered from my lap just feels a bit daunting all this xx thank you your messaged really cheered me up when i was really down last week xx

  • I'm so sorry you have been given this news, I know how upsetting this is. I'm a lot older than you (50) and have never wanted children but unfortunately I'm in the same position as you are in with my bowel being fused to my uterus. I went in for a hysterectomy in 2012 and it didn't go according to plan because everything in my pelvis was stuck together with adhesions. I don't have my ovaries any more but may be facing more surgery down the line on my bowel and it's very frightening.

    I know there is a lot to take in, and you are very raw from this which is devastating, but there are some good things in your post. You are young, and your endo has been found early, which gives you the best chance of getting pregnant if that is what you want. A lot of women don't find out about their endo until it is too late and a lot of damage has been done (I'm one of them, only diagnosed in my 40's). Your surgeon has told you your ovaries and tubes are OK which is great news. Finally you sound like you have a lovely boyfriend who is supportive, which is SO important.

    Take some time to process everything that has been thrown at you. You are just recovering from surgery and not in the best position to think straight. Once you have healed and rested sit down with your doctor, your boyfriend, your family or anyone else who knows you and your condition well and talk. It's not what you planned, but life has a way at chucking stuff at you when you least expect it. You will come through it with support, including the lovely people on here. All the best and take care.

  • Thank you for replying to me your message really touched me! I'm so sorry to hear about your story i really hope the further surgery improves your condition! i have my fingers crossed for you! I feel more positive now i have had time to come to terms with it all and recover i won't be talking to my consultant until October about the lap so i' guess i will know more then and treatment etc... he did mention about an operation on my bowels etc but i was so drugged up i was all out of sorts! My boyfriend and family have been so supportive! I've found this forum the most supportive and positive and it's really enabled me to put everything in perspective and be more positive about it all and mostly not feel alone!

  • Hi Hun,I'm so sorry to hear what your going through.i had the same operation 6 weeks bowel and uterus were also fused together and the endometriosis had gone through my bowel so had to have part of it removed.i haven't got a bag as the surgeon stapled it back together so no stoma bag was needed.when I was first told I may need a bag wether it be temp or perm I was 27and was told at 26 I may need a hysterectomy.the surgeons I had were fantastic and removed endo without any complications(I was in surgery for 7hours which gives u an idea how bad the endo was) recovery wasn't too long I was feelin better within 3weeks and that was having part of my bowel removed. Any more questions feel free to ask xxx

  • Hi your probably in shock at the information but it's not in possible to get pregnant I know plenty of ladies who have with endo on the bowel. Deffo look at a support group in ur area you might find some of the other ladies stories a great comfort. Also give ur boyfriend a bit more credit, I was only with my other half a yr when I was diagnosed and I told him to walk a way from me but he didn't and we have been together 3 1/2yrs. Just think about any questions u have and write them down for ur review appointment

  • I had my lap done in March and - thanks to surgeon being too busy to see me after - only found out in July that I have stage 4 (bowels stuck to uterus and ovary like you). My doc told me further surgery was too dangerous and I'm just going to have to live with the pain. I knew I was heading for IVF/ICSI but now this reduces the chances of it working for us. I'm terrified of it not working but there have been plenty of endo women who have had children. Just got to keep hoping.

  • I was just reading through this post and saw your reply. I am concerned that your doctor told you that they can't operate and you'll have to live with it. I too have my ovaries, bowel and uterus fused together but at no point have I been told they are going to leave it. I would strongly recommend that you get a second opinion and don't hang around - my right ovary and tube were completely clear in January but within 6 months they weren't. There are centres of excellence in endometriosis and if you can request a referral to one then please do x

  • I've been thinking about pushing for the op but the doc said it was quite dangerous and that she'd have to refer me elsewhere (more waiting) It would also definitely delay IVF. To be honest, I'm a bit scared to have it.

  • I'm not entirely sure how nhs works (I live in the Channel Islands and have been referred into nhs for treatment as they can't do it locally - which makes me suspect I'm a step ahead of you as my consultant couldn't do the op but the one I have in the uk can) but could you opt to have ivf in one of the specialist centres so they can consider the endo, scans and lap at the same time? It is scary but having heard stories from people who left it I'm inclined to think that is scarier.

  • Hi, really sorry to read how you are feeling. Just wanted to try to give you some reassurance. My endo has affected my tubes and I have stuck down ovaries. My surgeon immediately referred me for IVF after my lap (I'm 36 so couldn't hang about!) And I got pregnant on our first attempt and am now 29 weeks! We saw a consultant at 16 weeks who said because of my tubes it would've been almost impossible to get pregnant naturally. So if your tubes and ovaries aren't affected please don't lose hope about getting pregnant! You stand a much better chance than I did ;-)

    I hope that helps to reassure you at least on the pregnancy side of things


  • Hi,

    I'm so sorry you are feeling so low, it is completely understandable for you to be feeling this way so soon after your lap. I have had four laps and the recovery time has varied from about two weeks to up to six weeks (one of my cuts got infected and I had to have alot of endo cut out as well as separating my bowel from my uterus so took longer to heal that time).

    I can completely relate to the fear of not being able to have children but I am sat here 12 weeks pregnant after thinking it was never going to happen for us. Please take solace in the fact that your ovaries and tubes are okay, they are very important in the baby making process! I was also diagnosed with adenomyosis (where it is in the lining of the womb) during my third lap so was devastated to think my chances were even more slim. It took us a while but it happened. My pain levels were high so I tried acupuncture and the endo diet and they both really helped with my symptoms, and eventually to becoming pregnant.

    I know it's really hard but try not to push your boyfriend away...he sounds really supportive and like he wants to be with you regardless of your health situation. You are not broken lovely, you have a horrible disease which can be a difficult one to deal with but you are still you, never forget that.

    I felt constant guilt over the fact I felt damaged and might not be able to give him children and it came close to breaking us up. However we began to talk very openly about everything (with the help of a therapist in the end) and we have come through even stronger than ever.

    The feelings you are processing are very raw, you are also probably in pain from your op which doesn't help dealing with the emotional side to this condition. Please try and rest and let your boyfriend take care of you at least for the next few days. When you are feeling stronger you can start to think about the emotional side of what you have been through and what you are facing.

    The most important piece of advice from my experience is to talk to someone, whether it be your boyfriend, friend, family member or on here. Sharing what you are going through is essential, it is very easy to feel alone with this disease an think that no one understands but even if people don't understand the pain and physical symptoms you can help them understand your feelings and fears.

    Please remember you are not alone, there are ladies out there like me who completely understand what you are going through and are only too willing to help where we can.

    Take care xxx

    P.S. Daily strength is another great online support group if you need advice/ support from ladies with endo x

  • I had my lap on wednesday...wasn't told a lot..but I do have Endo. For some reason I'm not in any pain really but was told its too early to say if I can have children or if the surgery was even successful. I also have 3 incisions..they were going to fit the mirena but my cervix wouldnt dilate and they said my uterus would have perforated if it was probably back to tablets for me :(

  • Hello. I'm sorry it was bad news for you. My bowel is fused to my womb too. I have a gorgeous 9 year old daughter whom I had no trouble conceiving. We are all different but your diagnosis does not mean you can't have the things you want in life. I am almost 40 and zm scheduled for a full hysterectomy in 2 weeks. My consultant is hopeful that sny colostomy bag needed will be temporary. If not, such is life, at least I'll be pain free. As for your partner. Let him love you and support you. Don't push him away, he wants you, broken bits too. I know it's devastating when diagnosed but you'll learn to adjust. Good luck and take care x

  • Hi hun,

    I have just turned 20 & had my first lap in April. The surgeon told me it was one of the worst cases he had seen- all over my bowel, bladder, rectum, uterus, tubes, ovaries & in my general abdominal cavity, as well as cysts, adenmyosis & adhesions. The worst part of it was they couldn't even remove more than a tiny amount for biopsy as halfway through the op my oxygen levels dropped & I started bleeding out. When I came round the doctor told me I was going to need specialist surgery & it was very unlikely that I will ever have kids. Since I have been in & out of hospital with several infections & they are concerned because although it is very rare the endo could be spreading in to my chest cavity. I am waiting to see a specialist again to discuss the next steps now. I've also got several other illnesses on to of Endo so as you can imagine it's not easy.

    Like you I feel broken & guilty because my 25 year old fiance will probably never be able to have kids with me. However he made a very good point to me- he told me that he's not with me because he wants a future with kids in it, he wants a future with me & that children aren't the be all & end all, just as long as we're happy.

    At least the doctor has told you that you are still able to have kids hun, & if anything this could be a green light to maybe start trying?

    All the best xxx

  • im so sorry for ur news hun im 32 and please dont feel broken i felt the same after having to have a full hysterectomy at the age of 26 because of endo but im not going to say it gets easier because it doesnt but ur boyfriend sounds like a really nice guy who loves u for u and he knows there is possibilities u might not be ablel to have children but he is right there is other ways im trying to adopt at the moment and i know it isnt the same but u still get to be a mummy and please if u ever need to talk im here x

  • I don't understand how it's possible that all us young girls get told the same thing. It really pisses me off that we get dismissed for being so young then the minute they open us up it's 'oh, you have a serious case and you must have a high pain threshold'. The bit I am struggling with is that we have to make all these sacrifices and it won't even give us a 'normal' life. Well, sod it, you're a good person who genuinely cares about others. Have your lovely boyfriend and have your career you deserve it. You will have better support at university than in any job and you will get the opportunity to balance endo with that job. I am quite sure from what they've said that you can make babies :) it's up to you if you want them. I'm 24. Only 24 and I have nightmares about colostomy bags and hysterectomies, bone thinning and a life of never ending pain. Face blood and agonising pain every time I go to the loo. My friends will never get it, my mum isn't even there yet. It's heart breaking but I don't know what the answers are. Keep doing what you want so the pain isn't the centre of your life, even if it is constant part. Don't go around it. It's what I try to do. Today is only the day after. Keep going :) xxx

  • I'll keep this short and sweet for you and hope it gives you some reassurance. I have endo in exactly the same places as you and also have clear ovaries and tubes. I too always worried I would not have children but am currently lying in bed next to my beautiful, amazing 7 week old baby boy in his crib. Have faith, don't stress and let nature take it's course when you're ready (I'm 38!). Endo should only affect your fertility if your reproductive organs are affected by it. I know how hard it is to deal with this condition and the pain it causes, so try not to let it affect your stress levels too. Xxx

  • Hi, Im a similar situation. I was diagnosed with endo in Jan, had my lap in march and was told the same thing. I have stage 4 endo, everything is stuck together, some organs i didn't know exist are stuck. Unlucky for me my left tube is blocked so having children is going to be a struggle for me, i willing to fight! I'm now 18, just finished college and was planning to go to uni to study special needs in the best course in the country. I was so happy i got a place! Now time has gone by I've decided not to go to uni and instead work fulltime as a teaching assistant near the support of my family, friends & boyfriend. you're not broken, i used to think of myself as damaged goods which in a way is true. But just because i have a disease doesnt mean I'm worth any less. I've gone through depression and I'm still slightly low but I'm getting there! I'm waiting to hear back from my surgeon as im being put through for the follow up surgery as an urgent case. It is hard, especially when you've got so much planned for your life and this comes along and mucks everything up! You're not broken, you may feel like it now but You're strong!

    I wish you all the best!xx

  • Just to add a later note for anyone that finds this. I had to have emergency surgery (done privately) for an orange sized endometrioma that was trying to rupture. My gynae guessed if I had something like that, I was probably endo stage IV with adhesions and he called a colorectal surgeon in to work with him.

    I had an obliterated pelvis (bowel well stuck to my uterus and left ovary). Everything below was blocked in by it and they couldn't reach the cyst. The colo-rectal surgeon freed up my bowel, my gynae got in and dealt with the endometrioma. It took about an hour.

    My point is, it's worth asking the question who's operating. If it's a gynae they might be nervous about the bowel detachment as it's not their primary area of knowledge. I've read it's not unusual for them to dissuade you from a certain path because they aren't confidence about handling it, not that it can't be done.

    My gynae had no such issues about saying that wasn't something he was happy doing and just got a colorectal surgeon to work with him.

    If anyone else reads this thread and they are newly diagnosed and having a rough time, it's worth calling the Endometriosis UK helpline for support. There are also semi-regular newly diagnosed meetings on the online support group too. Don't be afraid. I found it really helpful to speak to other women about all my confusing feelings at time of diagnosis. I'm much more grounded about it all now.

You may also like...