Confused and don't know what to do!

Basically I am really confused about what to do. I had a miscarriage in January 2015 at 10.5 weeks and was gutted. I have been told (since the age of 15) that having a baby would be the solution to my problems (the symptoms would either reduce/ go completely. or I could have a hysterectomy). I have had endo for years. I am only 21 but I know I want children, so why wait and be in pain???

I have spoken to my boyfriend and he wants to get our recently bought house up together first (it is liveable now but he wants to make it better). So we decided 3 years time would be a good time to have children . However I am just existing not living. i feel cr@p all the time and my periods are just horrific.

We rarely have sex (every 3 months or so).

I have come off the pill without him knowing last week (we havent had sex in months). And I feel so guilty. I feel bad as I want it to be a joint decision but he really isnt supportive in this. We are stable financially and in our relationship. He has known since the beginning about my issues. Yet he wants to wait til he is ready which I know that he will never admit he is ready (but who is truly ever ready for babies?)

Basically I want to know if there is anyone out there who has been in a similar situation and what they did.

Please dont judge, I feel guilty enough as it is but I dont know what else to do :-(

9 Replies

  • I don't blame you at all; I've had several miscarriages and was diagnosed at 21 (I am now 42). It is the one thing I regret...not focusing entirely on having children but like so many I figured there was plenty of time and back then, there was not as much knowledge about the disease as there is today. The pill is only about 75% effective in any event so personally (and this is personally) I would hope for pregnancy and if it happens, say it's just one of those things (I doubt he tells you EVERYTHING).

    Some may feel this is not fair on either of you but you are right...planning and some preparation may be advisable but nobody is ever really ready for children. I really wish I had pushed myself and my then partner but after four miscarriages, I just gave up and I wouldn't wish that upon anyone else. I would, however, strongly urge you to find out if it's possible to determine the cause of the miscarriage; one is not unusual (perhaps even two) but I was told that the number I had was no common and should get this investigated as there may be links to the endo but not necessarily. I've been married since 2010 and we stopped having sex (due to pain) in or around 2013 so you definitely have my sympathy there; even though there are other ways to have sex which do not involve penetration, I personally miss that aspect of it but my drive has also disappeared given the constant pain and depression.

    With all due respect to others' opinions and perhaps that of your own, even if your partner decides - if you have a baby - that the relationship wasn't ready and leaves you, at least you will have a child though of course there are other considerations which should be thought through very carefully, such as whether you will be able to cope as a single parent and all the issues that entails.

    I do not doubt others will disagree but to me, a child is more important than a man (or woman) and it is the thing I regret the most about this condition that I did not try hard enough to maintain my pregnancies, investigate the reasons for the many miscarriages and how I've had a hysterectomy, there's no turning back. Think hard about this and talk to family and friends but ultimately, the decision is yours.

    Good luck..

  • Thank you to your response and honesty. Sounds like you've been through a tough time :-( My mum had the same conditions as me and ended up with 2 blood transfusions and an emergency hysterectomy due to not taking action sooner which is why i am so aware of myself and my needs now. It's tough because i feel awful lying, but he is being selfish by his choices and not listening to me

    Will have to think it through i think. Need a day away from everything to think it through.

    Thank you for your honest response, it means so much xxx

  • Hi,

    It is completely understandable and you are not the only one who had been in this position. I kind of have. I take it he was happy to have a baby when you were pregnant?

    I'm going to be really brutal, but I say this because I have/I am going through it.

    Pregnancy will only give you 9 month pain free!! Do not listen to anyone else who tells you otherwise. So if you really want a baby do it for that reason not for the painfree time. It will not cure endo.

    the pain will come back at some point and being a parent is hard!! trying to be the best mum you can be when you are in constant pain is a very hard, challenging and lonely experience. You have no choice but to grit your teeth and get on with it. And it's really really hard.

    Your partner probably just doesn't know. And that is why he isn't being supportive. And if he has had the emotional roller coaster of a miscarriage then he probably can't face going through that again. It hits the men even though it isn't happening to them.

    Talk to him. Explain to him that endo can, at any point grow on a tube, ovaries and dramaticly effect your fertility. You can obviously fall pregnant so you are still in a good position for children. Tell him in 3 years there is a chance falling pregnant might not be possible. He might start seeing it from your side.

    I showed my partner these picture. My partner seen these and he said it showed him im normal and just like her. He understood.

    Talk to your partner. If you mislead him, he might never trust you again. And that can destroy your relationship. put yourself In his shoes and ask him to do the same.

    Good luck love. Be strong and things will be better soon. Xx

  • He was over the moon when we found out the first time. That is why i am feeling so bad about it but I feel he is being selfish too. I had to deal with the miscarriage all by myself for months because he said "it didnt matter2. I know he was only saying that because he was hurting but it still hurt me. I know but thats why id rather do parenting when i am younger as ill have youth on my side rather than age, pain etc. I know pregnancy isnt the easy way out. I found it tough in those 6 weeks of actually being pregnant but at least it is a way out. Thank you to your response and honesty, it means a lot xxx

  • Hello

    i take it you feel like as you are young its the best time for you to have children while your endo is letting you concieve... i totally understand that.

    i am 28. I have a daughter 5 years old and currently 5 months pregnant.

    I got told at 18 years old i wouldnt be able to have children... its good to proove wrong!

    My first pregnancy was monitored really well with extra scans. Had first scan at 6 weeks and had a close eye kept on everything. Pains disapeared around 14-15 weeks of pregnancy then was pain free until 3 months after my daughter was born and pains were not as worse as before but as years went by pains and periods got worse and agonising. Always planned for another child but ill be honest the after sex pain was soooo bad it really put me off. I had my first laposcopy last year and surgeon told me as soon as i recover from the op i should start trying for a baby. He said my chances were higher as he had burnt away alot of endo and it hadnt spread badly (like u read on here... some other women are riddled with it).

    We tried and tried and finally became pregnant end of march. I am currently 5 months pregnant. Again ive been monitored well and had a scan at 4 weeks of pregnancy this time. The early pregnancy units have super good teams. My endo pains disapeared at 10 weeks of pregnancy.

    I am due around christmas time and my patner hated this when we found out we were pregnant. When i was having my op last year he said we should start trying summer of 2015. I didnt agree with this as the doc had told us best chances were asap after op. By summer 2015 my endo could have grown back and spread else where too making our chances less. As baby is due at xmas i felt he didnt warm to the fact for the first month or so but at the end of the day we will end up with a 2nd child and sod what day its born!!

    Like the person above this comment says... you never know what your endo is doing. By 3 years time ur endo could be 3x worse and spread and ur chances would drop rapidly. If u are happy with ur partner and are fully committed i think u need to seriously talk to him. Explain that it can get worse. I agree with you whilst your young and able to conceive naturally then keep trying. If u dont need to put yourself through an op before hand then dont let time get the better of u and recovery was long and painful too.

    im sorry about your misscarrige i hope u have all sucsess in future and as soon as u find out you are pregnant explain ur endo condition and ask for an early scan to check all is good.

    Sorry for the essay

    Emma x

  • Congratulations on your pregnancy! Thank you for posting your story, its helped me think things through. Im just not sure how much longer I can go on without a baby or with this pain. Just really struggling as I know no-one who has endo and that I can talk to (my mum isnt close to me at all). I exercise and try to eat as healthily as possible (with some treats). My partner just doesnt understand what its like to feel constantly ill or in pain so dont think he understands how important and life changing this could be for me. I understand parenting is hard at the best of times, let alone when youre in pain but if I can just have children earlier, I can also have treatment earlier which could help things.

    Thanks again for replying and good luck with everything xx

  • Sam is right about the endo and pregnancy; years ago when I was in my early twenties I was told to get pregnant and it would "cure" the endometriosis. They now know that all it does it alleviate the symptoms for a period (which varies) given that your lining is no longer being shed as it becomes the baby's protection; in the old days, because so many women had numerous children from a young age, endo wasn't really an issue - women had several children until they were in their thirties or forties and then usually hit menopause. My paternal grandmother got married when she was 14 and stayed pregnant for most of her life (she had 23 kids - there's no television in Sicily in those days!).

    However, my maternal grandmother, mother and myself all had miscarriages though both granny and mother had children obviously; mine never managed to get beyond 22 weeks. However, we all had endometriosis.

    You must remember that if you do go ahead and get pregnant without his consent or knowledge, and the risk is that he may not proceed with the relationship based on that 'deception'....if your pregnancy holds and you are lucky to have the child, it will be a burden as well as a joy. When in pain, I can barely even deal with feeding the cats, let alone coping with a baby; I remember a few times staying with family when I was going through my third pregnancy and my cousin's children (then aged 18 months and 4 years) were playing and crying and shouting; I honestly felt like I would throttle the pair of them (I was supposed to be babysitting) and had to call his wife to come back from her spa day because I couldn't cope.

    Endo is hard enough and a child (particularly if you are a single parent - even with the support of family/friends) can be an even greater strain; sometimes I think (and this is for me only) that maybe it was better I had no children as I don't want to live myself and I fear with my anger at times I would have hurt my baby if I had managed to bear the child. Sorry to be blunt and I'm crying as I write this because I remember feeling so much despair and anger at the pain I was going through. It is normal to want to be a mother but it's a decision and life only you can decide you want - whether alone or with a current/new partner. We all have our own opinion and experience and despite wanting a child, sometime for me at least I think it was better I remained childless so as to avoid hurting them.

    I was told I could not have children after a few years but ironically, I have no trouble getting pregnant, I just always miscarry.

    My field is criminology - used to be law - and I've dealt with a lot of cases where mothers just cannot cope and neglect (and in some cases do worse to) their children. This is not to suggest this would happen to you of course but simply to make you aware that sometimes, even with the best support in the world (including possibly your partner) the endometriosis can completely take over your life and I know several people who have taken their own lives - and I often consider it myself.

    I've digressed for which I apologise; as I said before, the decision is a hard one and only you can determine what is right for you. Do not get pregnant, however, based on a belief that your endo will disappear - it may go into remission for anything from several months to several years but remains in place.

    Good luck whatever you decide; having been there myself four times, I know how hard it is to cope with a miscarriage.

  • Thank you for replying. I'm so sorry for your losses. I understand what you are saying, but I'm by no means saying that pregnancy is a solution. My aim would be to have children (if possible) and be pregnant reasonably quickly so that i could have a hysterectomy or some other form of treatment as I dont want to go down the same path as my mother, who left it too late and had to have an emergency hysterectomy. I understand why endo can leave you unable to get pregnant or carry a baby to full term, which is why I'd want age on my side. I also understand what you are saying in terms of my partner, I agree completely hence why I reached out to others to give me advice. But Im not sure how much longer I can go without a child and with this pain. I know that he wants children and the only reason why he is waiting is because he wants to do up the house. In my mind im thinking, well whats more important a house or my health and happiness? I understand that its deceitful and horrible but what he is doing is also horrible in a way.

    He knows I am in pain yet does nothing to help ease it.

    Thank you for responding, I really appreciate it x

  • I think you should print your comment and ours and ask your partner to read through; it may be that he doesn't understand the depth of your feeling. Sometimes this is a hard disease on partners - one of the reasons I didn't want to get involved with anyone but my husband persuaded me! - He's also fighting this disease in his own way. He may be saying it's about the house being ready but mean that he wants to give you both a chance to be together before your life is overtaken by a child (and given your illness, along with a child, your time would rightly be spent focusing on those two). Talk to him, honestly and openly and you may find that you actually share the same concerns but are responding in different ways. Alternatively, cut out the bits about 'deception' and maybe see if you can find a local support endo group where partners attend. My husband found it useful when we went together once as (1) he saw he wasn't alone and (2) saw other women helping him realise that overall, my condition is shared by others and symptoms can be similar...

    Good luck

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