Scared

Hi everyone.

I am in such a hard situation right now. I have suffered with endo for 10 years (i am 23 years old) and have been told by my gyne that i need to have children in the next 2-3 years as my endo is getting worse and rapidly running out of options to suppress it. I spoke to my fiancé yesterday and told him exactly this. He doesnt want children..not for at least 5+ years. He said that breaking up with me is an option (we have together nearly 8 years). I was wondering if anyone else has/had the same problem and how to bring my relationship back from the dead. It is the hardest decision to tell him and pour my heart out to him like i did for him to react like this. Something that is completely out of my control. My only dream/goal in life is for my own family with the man i love. Please can anybody help? X

31 Replies

oldestnewest
  • Oh you poor thing, I'm afraid no body can advise you regarding this. You may need to give him time to process the information though, it's a lot to take in,

    Does he go with you to the appointments, bay be if he heard it more directly from a professional it could sink in more,

    Have you had your endo excised? And do you see a specialist in a BSGE centre,

    I hope you find you answers, and you both make the right decisions for you,

    Good luck, xxx

  • Thankyou Tboag. Yes hav had laparoscopy twice and burnt off once but keeps coming back with a vengeance. I know he needs time which is totally understandable but at the risk of sounding selfish i dont actually have time. He has said that he cant promise he can give that to me but will see how we go but dont know what to do/say to that as i dnt have time to waste. I dont want them with anyone else. So emotionally drained. Yes he has been to a couple of appointments with me but he doesnt really take much notice of whats being said. Losing the will at the moment. I hope you are having a pain free day today xx

  • Burnt off isn't really a good option, and the gold standard of treatment is total excision via a BSGE endo specialist centre, are you being seen at one??

  • What is a BSGE centre? I had a skin graft too

  • It's a centre set up with specialist endometriosis excision expertise, because endo isn't only a gyne problem, a genral gyne isn't specialised in endometriosis, nor the excision surgery that is required, please look up a lady who is on here, Lindle, she has some very informative posts,

    Lots of ladies, like me have been operated on by a gyne surgeon, and unfortunately they have missed endo, it can present its self in lots of locations that perhaps a genral gyne wouldn't look for, read her posts, and let me know if I can help you any more,

    I know we have gone off subject, but the best thing for you would be the best possible treatment that is available, which could in turn give you more time and a better life,

    Xxx

  • Oh thankyou. My gyne specialises in endo though. So i must be being seen at a BSGE centre without realising. You have been so helpful..thankyou. I will look her up..brilliant! I hope are having a good day without pain xxx

  • Unfortunately I don't have many of them, I'm a lot better than I was before my hysterectomy, I had Adenomyosis as well as endo, but don't think he got all my endo, hence the about post, he specialised in endo and laps but wasn't on the list, I've got an appointment at a BSGE centre 18th Dec, so I'm hoping he will sort me out better,

    I'm happy to try and help, I love this site, it's helped me do much, and Lindle is fab, a must read,

    Xx

  • Oh bless you! You soldier! I feel for you. I am glad to hear that you feel better now althought that is a hard situation. Yes this site is so helpful and a relief to talk to women who actually understand and feel what you go through on a day to day basis. Oh will be praying for you and your appointment on 18th. No i dont have many pain free days either. Thankyou for all you help..your an angel xx

  • Good night darling, xxx

  • I agree with Tbog here hun, it is so important you are seen by an endometriosis specialist because I had the exact experience she's talking about - my first laparoscopicy was performed by a general gynaecologist and my endo was missed. Luckily a year later I finally got diagnosed by an endo specialist. Just make sure you do your research hun, it could save you a bit more time and (god forbid) your relationship.

    Good luck with it all I hope whatever happens you'll be happy. Keep us updated, lots of love and hugs louise Xxx

  • Thankyou Louise. As sad as it is that we have this horrific disease i am so glad that i have such a supportive community on here. You are all angels in my eyes! I really want to get this seeing an endo specialist ball rolling but my mum is trying to put me off by saying there is nothing wrong with my gynecologist. But everyone one here says differently. I am torn. Maybe i should just go to docs and see what they would suggest. My gynecologist is following a endo course of action for me which i thought was what happened to us all? I really dont know..maybe i am wrong. Very confused at the moment. I will keep you updated. Thankyou angels. Night night xxxx

  • Do whats best for you babe! I know our mums are only thinking of the time it will take to be referred etc. But believe me it will be worth the wait and you won't regret it.

    Good luck hun xxx

  • Thankyou so much hun. I think i will go ahead in a month to see if my docs can refer me. I hope you are having a pain free day my fellow angel soldier xxx

  • I feel in exactly the same situation! I'm 25, at 21 when I came out of theatre the consultant told myself and my partner we needed to hurry up and have children ASAP....we still haven't. At 21 I really wanted children....the older I'm getting the more I'm thinking about it a bit more logically. I've been with my partner for 6 years and he's still not readay even though he knows the situation. Last Thursday I had an urgent ultra sound as in so much pain....end has been found in both ovaries and quite a large mass of it in one...I'm now wishing I hadn't of waited to have children as I know don't know what will happen and if I ever can.

    The more I think about children I keep trying to talk myself out of wanting them as I'm too scared of the heart ache that I may never be able to....is this really a world to bring children up in now?...how will I cope if I'm constantly in pain with endo and children to look after?...what happens if I have a girl and she has to go through exactly what I'm going through?(I would never forgive myself for that as I wouldn't even wish this condition on my worst enemy!)...what happens if I pass on feeling depressed to my children?....etc etc

    I really do sympathise with you as if my partner said yes let's start trying I would be extremely scared but I would go for it...but because he's not ready, I'm trying to put on a brace face to everyone saying I'm not ready as well...when in truth I don't think i will ever be ready to start trying but I know with this condition sooner rather than later is important.

    I'm off to the gp this morning and dragging him with me as I know I need to be refered again for my third lap and possibly have my eggs harvested (if there is any left now!)

    It's difficult as I think sometimes they only see/hear what they want to...I hope he starts to understand you xxx

  • Oh Tanni your poor thing! It is so hard. I know what you mean..i really dont want to pass this on to my little girl if i have one..its a very very hard decision and an extremely hard situation to be in. I really feel for you! I know i will go downhill sooner than expected which is why in my head i feel i need to start trying this/next year. Its all i have ever wanted..my own family with my amazing man. But i know i cannot force him into having children..but at the same time he cannot force me to not have any. So confused and lost at the moment. Im sorry to hear you are having a very bad time at the moment..you must be exhausted! I hope they can harvest some of your eggs for you..at least then you can relax a bit more about your options. I really hope your next laparoscopy will help you stay pain free for a little while longer xxx

  • I completely agree with you there, you can not force them...I find the more I try and force the more I push my partner away.

    I just want to come and give you a massive hug!!!!!!! Just talking on this sit has helped me massively in the last few days when I've felt lost and completely alone....even though o have family and friends around me I feel so lonely and they are all pushing me to push my partner into having babies!...we are both only 25 so I feel like I want to enjoy a bit more of our life's together before we start bringing children into the mix!

    Are you due to see your gynaecologist soon??? If so why don't you ask about freezing eggs too if you want to have children with your partner then it's a compromise? it gives you the best possible chance of having your babies like you always wanted then? I'm not sure if they will do it on the nhs but I'm going to push for it when I finally have an appointment on the nhs!

    Been back to the gp again today and she wanted me to phone the specialist centre to ask if they would accept me as a patient if not she would refer me to my local hospital that doesn't specialise in endo...rang them and secretary doesn't work Friday's! After lots of toing and froing I've emailed the specialist centre and who I used to be under at my local hospital (which I also work at!) I managed to have a quick 5 minute chat with my old consultant as I broke down in his secretary's office so he agreed to see me to see if he could help it if I needed specialist...he said I do need the specialist and that harvesting eggs is going to be the best option for me! So because I'm inpatient and fed up of pain I've booked a private consultation with the specialist consultant that I saw previously at the specialist centre for next Friday to try and speed things along and so I can get answers to whether I can have eggs harvested, if I need another lap, if they harvest eggs will they remove ovaries etc....I'm going to try and get a list of questions together to ask him and make the most of paying £190 for his time!!!!

    Sorry I've just gone and ranted loads about me!!...I hope my queries at the moment with my endo will help you. I really hope your partner starts to understand.....but even saying that I know how difficult my partner finds it to talk about everything and I feel he doesn't support me when he does but doesn't do it in the way I want him to! Mine is very blunt and to the point and he is just as fed up of this as I am as 'we go through this every month' but these last two weeks have been worse than it's ever been so I know I haven't been easy to live with' where as i want cuddles, pain relief brought up to bed with out asking/snapping at him, hot water bottles refilled, and a shoulder to cry on....although my eyes are sore from crying today I don't think I can cry anymore! I feel like a shadow of my former self, I just wish I was happy, bubbly, energetic, caring for everyone else, loving, easy going and loving life girl I used to be! At the moment I feel like one of those hermit crabs just hiding away in its shell as the world just seems so rubbish and I can't cope with it anymore and have that can't be bothered feeling which is not me! xxx

  • Oh Tanni bless your heart! I honestly feel your pain sweetie. You rant away..honestly i know its i ever want to do when i finally talk to people that are the position as me. I think harvesting your eggs is a brilliant idea! I really want to see if i can do that. Yeah my man is the same..he admitted to me that hes considered leaving me a couple months ago because of how stressful it is and how much we cant do because of it which shocked me but i totally understand why. I feel so so sorry for him though..he can be really good and get me hot water bottles and run me baths which is perfect but other times hes exhausted from it. It affects them too. I know i am no longer my happy..outgoing caring self. Its horrible to see someone else change like that but when its yourself its so frustrating. Like 'i am still that person under all this largic..stroppy..tired mess!' but nothing we can do. Sorry to hear you are having a bad time with nhs/referrals. I really hope you get seen soon so you can finally get some help. No not got an appointment until January i think now. Its to see how these tablets are helping and if i need to go on to the next option..ugh! Xx

  • Oh bless you, that is so so difficult that you have to deal with the possibility of him thinking about leaving you a few months ago!

    I feel like its me pushing my partner away, I keep telling him I wouldn't blame him if he wanted to leave me as its not nice for him to be with me at the moment!

    I really hope when you go in Jan they will give you those options, I've never felt I needed to discuss those options with the doctors until now...and now concerned it's too late! Will the next option be more surgery?

    I will keep you posted how I get on with the consultant on Friday to see if they will do freezing eggs as that at least could give you options!

    It would be amazing to just wake up in the morning having been able to sleep, be pain free, feel happy again and feel like we can actually enjoy our life! Xxx

  • Oh that would be nice..and also nice to hear how you are getting on. Yeah i have said that to my fiancé too as it must be hard dealing with something that doesn't affect you physically. My next option would be zoladex..injection tablet..gross. Dont do things inside my body. I really hope its not too late for you! All fingers and toes crossed for you Tanni!! Xxx

  • Tanni, you sound like your having a hard time darling, your post has just made me cry with madness for us all, I have my children all boys thank god, as my problems started later in life, you young girls are so brave, just try to keep your chins up and be as positive as possible,

    Good luck and have a good weekend,

    Xxx

  • Breaking up IS an option? Poor you.

    I've been told the same thing for ten years now but still at 28 I'm not ready!

    Having had two laps just burning superficial endo not do anything and a pretty useless gyno, I went to the BSGE centre and had all that was in there removed plus some nodules taken out. It's proven to be better so far, although as you know, endo comes back so there in guarantee how long normality will last. The doctor was great. So much better than the gyno I had been seeing for years, who had no special knowledge of endo - in fact I think I probably knew more through Google than he did.

    So before you start trying or leaving your boyfriend, insist your GP refer you. It's the best, proactive thing I've done and I'm sure they'll give you some sensible and life appropriate answers.

    Good luck x

  • Thankyou sireland. I love how helpful everyone is. My gyne actually specifies in endo..thats all he does so he is really good its just my endo keeps coming back harder and faster each time. It is a very difficult situation. I would never leave my fiancé its him that said leaving me is an option. Just makes me angry that this bluddy disease can ruin amazing relationships! I am so glad to hear that you are getting better help now. Its so relieving when you finally get heard properly by specialists. I hope your having a pain free day xx

  • Inwould check to see if your gaeni is in an accredited centre they are listed on the BSGE website .

    If it is then they should have a fertility specialist on the team who your gaeni can talk to re your situation .if not I suggest you ask fir a referral to a BSGE centre for a possible better outcome

    All the best

  • Thankyou mablesky. I will check that now. Hope your having a pain free day xx

  • Nobody can tell you how you feel; I've had relationships fail because of this very issue and in the end I went ahead on my own but I was fortunate, I had both my mother and financial security to provide support but being a single parent is not an easy path. That said, perhaps your partner needs to understand in depth how long this disease will permit you to become a parent. Some men don't want children when they are young whilst others embrace the idea; you cannot force him to decide and can only do what is best for you.

    Being a parent would have been wonderful for me but I had four miscarriages and I do genuinely feel regret that I didn't try when I was younger and the disease not so advanced. I was diagnosed two months before I turned 21 and had endo for years before that; I'm now 42 and had both ovaries and my uterus removed almost 11 years ago now and although I am confident that this was the right choice, I do regret not having children. If your partner is talking about breaking up with you as an option then - depending on how he puts it - seems a little disingenuous and almost seems to be an ultimatum. What you don't want to do however is hold off on your ability to become a mother for him...find you can't conceive in the future...and then blame him.

    We'll all advise and support you but the decision is yours alone; talk to him, get him to read some of the posts on here and see if that helps him understand. He may change his mind, he may remain with you or not but if you really want children and the doctor is saying it's now or maybe never...what is more important? A partner who supports you or one who gives ultimatums? That is a simplistic I know but only you can know what you want and how much you want it; you are young and to be fair some people manage to have children later in their life despite having endo. It is an awful situation but - and this is just MY view - I would have a child and hope he stays but accept he may leave. Remember, it's financially and emotionally difficult to be a single parent and to be fair, you may find a different partner in the future. We none of us have complete confidence in what the future holds but children are a great gift and whilst the man you love now may not want to be a parent, what is important is what you want. I'm practically repeating myself over and over here I know but we really can't tell you want to do.

    Does he go to your hospital appointments with you? Maybe that would help (or not) but at least his choice would be better informed if he fully understood - assuming of course that he doesn't at present.

    Good luck....

  • Oh maria7800 those are amazing words of advice. You know i completely agree with you. Some people may think i am being selfish but i cant risk not having the only thing i want in life because hes not ready. I dont have time to waste like he does. He has come to a couple of appointments where my gybe has sed to me about the timespan but he just doesnt take notice which is frustrating. I am totally stuck. Either delay having children (if i can even have any bybthe time hes ready) or leave the man i have lived for nearly 8 years so i can have my dream. I have never felt so lost and sruck in my life. I am scared of bringing the subject up as it is driving such a wedge between us the last 2 days. Its all i can thinkabout whereas he is doing everything to not think about it. Argh!! I really appreciate all your advice. Brilliant! I am so sorrybto hear that you have had to have such extensive surgery and to hear your regrets. Its an awful disease that completely destroys lives. I hope you are having a pain free day. Xxx

  • I think sometimes we have to be selfish; so much is taken out of our control with endo...we have to take to control where we can. Have a serious think and discussion with your family/friends as they know you best and are (hopefully) going to support you through whichever decision you make....

    Regards

    Maria

  • Thankyou so so much everyone for such brilliant support and advice! I will need to have a big think about it. Cannot talk to anyone as no one really cares/understands/realises what pressures and strains i am going through so will have to be a decision i make on my own unfortunately. Thankyou maria7800 xxx

  • Hi there,

    I've been in a very similar position to you. Diagnosed at 24 and told would need ivf at 27, then not to leave it beyond 30.

    Happily I am now pregnant (at 30) and we conceived very quickly - so the doctors aren't always right!

    You really need to have a number of conversations with your fiancé about this and I wouldn't make any rash decisions in either direction. It's a matter of weighing up the pros and cons of what is right for you as a couple and what you can mentally/physically cope with.

    For us , if we had had children earlier financially it would have been really stressful and we wouldn't have owned our own house or had the nice wedding we had, plus all the stress of parenting. On the plus side though I would have had a hysterectomy by now and, fingers crossed have been able to progress and get on with life earlier.

    To summarise the negatives of waiting for us personally

    - as time went on endo progressed and I underwent 4 surgeries, 2 of them major inc. partial bowel resection and was booked for a 5th major.

    - loss of income/progression due to time off for illness/surgery. Hubby having to work 70hr week for us to stay afloat.

    - stress of saving for ivf, paying for private med care when the nhs took too long.

    - with waiting our risk of miscarriage increased. We went through 2 early miscarriages, this really made my husband wake up and smell the coffee - his friends by this point have begun to settle down and their wives/gfs are popping them out easily. Meanwhile we are on tenterhooks praying our baby will make it and there are greater risks to me in the pregnancy.

    - we had so many arguments and had so much stress dealing with the 'endo saga' the last 6 years.

    It might be a good idea to show your fiancé this to show him that from a male perspective endo can be incredibly tough and emotionally painful as well. No matter what you do it will be tough, I think the best thing to do is communicate and try to work out a compromise. Be realistic about your situation and try not to get too stressed or frightened. Put your energy into coming up with a solution and be determined to not let endo beat you.

    It will be ok, just talk to him. Xx

    P.s. Agree that you need excision surgery preferably at an endo centre.

    Also please be mindful of how critical you are of him. If you're saying 'I don't have time to waste' to him it's like saying 'you're a time waster and a waste of space' to him. You need to give him time to process what is going on and let him try and come up with a solution with you - he is entitled to his own dreams, aspirations and life plan as you are. He maybe just hasn't considered that waiting to get preg - and thus letting endo progress unabated in a severe case could be equally as stressful as launching into parenthood earlier than expected. Give him a chance and some space, men don't react well to being backed into a corner. X

  • Oh thankyou applebird. I am so overwhelmed by everyones support and loving advice as i dont have any of that out of this forum. I am so so happy to hear you are pregnant..must be such an amazing feeling! So sorry to hear of previous miscarriages for you both though. Such a hard time. I try to talk but end up shutting down as too scared/worried to hear what he might say or outcome of possibility of having children. You are right though we need to stick at communicating as this is a life changing situation for both of us in both ways whether we go ahead or not. We are not financially ready right now and still house hunting as we speak but hopefully this time next year that will all be sorted. Fingers crossed! I will definitely show him all messages from today as its important for him to see that he, as a man, is not the only one having to deal with such stress and pressure. He isnt alone. Thankyou so much. I hope you, your husband and baby are ok xxx

  • No prob at all, everyone is really helpful here and kind, it's a lovely community.

    Don't be frightened of talking to him, he's your partner of eight years and he loves you. Right now, very naturally, you're in panic mode and in shock. You'll feel totally overwhelmed and in turmoil, he's going through this right with you. Women are great at talking, with my husband he later told me he hid a lot of his feelings and worries because he felt I already had enough on my plate. He may be quiet on the surface but underneath it all could be a different story!

    Men are always going to be focused on finances, they want to be secure to provide for their family, its innate.

    Honestly you are getting a house and getting married these are amazing defining moments in your life - enjoy them and be happy! You deserve to have these experiences together for yourselves. It's ok to take a break from worrying about endo and throw yourself into other things.

    Wishing you so much luck with everything xx

You may also like...