Please stop trying to say the right thing!

I am 38 and was diagnosed with IBS in 2007. I got married in 2011 and we have been try to conceive ever since. You know how it is, married 2 years, everyone expects you to have a baby right away. I always had a feeling that things were not quite right and it wouldn't be that simple.

Early last year I went to the GP to raise the fact that I had not conceived, after more than 1 year. My very good and understanding GP got me onto the process, and after blood and sperm tests galore we were referred to the fertility clinic.

First step was the HSG. For those that don't know, this is where you have a catheter inserted into the cervix and then dye is pushed into the uterus whilst watched on an X-ray. The aim is to check that the fluid fills the uterus and tubes, and spills out showing no blockages. A highly unpleasant experience, and I actually struggled to get my head around how intrusive it all was!

My HSG immediately showed a problem with my tubes. Blockages at both ends and suspected hydrosalpinx which is ballooning of the tube caused by fluid build up. No one prepared me for how I would feel seeing my fertility (or lack thereof) played out on a monitor in front of me and it was a horrible confirmation that I was right and there was a major issue.

I was then put onto the waiting list for a laparoscopy to take a closer look, and had this lap in November, and was surprised that they found a) endo, and b) no hydrosalpinx, but blocked (clubbed) tubes. Perhaps a lot of my pseudo-IBS symptoms were endo after all!

I then saw the specialist who told me that I would need open surgery to try and repair the damage. The endo has also left adhesions all over my ovaries so eggs cannot get out even when I do ovulate. My tubes are completely closed and whilst I do not have a hydrosalpinx it will happen eventually.

Due to the risk of imminent hydrosalpinx, I cannot have IVF. Hydrosalpinx cause a build up of toxic fluid in the tubes, which leaks down into the uterus and causes miscarriage. My biggest frustration is the 6 month wait between diagnosis and my next op, for which I am still waiting. During this 6 months, it could be the case that a hydro has developed, and the only answer to this is removal of the tube(s) and then IVF.

Best case now is that the surgeon can remove the endo adhesions from my ovaries and uterus, and rebuild my tubes (not good chances) which stay open (even lower chances). Opened tubes often close again in 6-12 months which would put me back to square one, with no chance to have IVF due to the hydro risk.

This all means that after my op we have a window perhaps of 6 months to try and conceive. If successful, we have a high risk of ectopic pregnancy. If it is not ectopic, we have a high risk of miscarriage anyway.

My biggest difficulty now is finding a balance between staying hopeful and being realistic. I cannot risk getting my hopes up as I cannot deal with them being dashed. I need to stay positive though as if I assume it will not work, surely this negativity will have an impact? Ris is the hardest part.

I feel like I want to tell the world what I am going through, shout it from the rooftops, just to get recognition for my pain. People I do tell always react the same way, I get bombarded with the usual anecdotes about someone they know who knows someone who had IVF and now has a baby, or stopped trying then got pregnant, or had some other 'miracle baby'. No one tells you about the people who tried for years, tore themselves apart and didn't succeed. There are just as many if not more of these people than there are that 'got lucky'.

Each time a family member or friend says 'oh but I just know it will happen for you', I want to punch them. Can they see inside my pelvis? Are they psychic? Do they know better than a consultant with over 20 years experience?

I actually find myself wanting people to say "that's shit that you are unlikely to ever have a baby", rather than the constant and illfounded attempts to reassure.

I am sick of knowing that work are passing me by with opportunities for new roles or to relocate abroad, as everyone assumes that I will get pregnant soon. I feel like screaming at them! Even the locals in my village talk to me all the time about the local primary school, as if it will be important to me one day soon.

I am starting to accept that some people, perhaps including me, are unable to have babies, and this doesn't mean the end of the world or that we cannot be a part of society.

It's just a shame that the rest of the world cannot do the same.

11 Replies

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  • I'm afraid that the expectation is that all women will one day become mums. It's only now in my mid 40s and as I look old that, I get asked if I have kids and I say no, that that is the end of the questioning. Whereas for a long time it was do I have kids? Oh you better get a move on !!

    Arghhhhhh.

    And that was from long before I knew I couldn't ever have had them anyway.

    Many of my female cousins had their first babies in their teens and 20's.

    Luckily none of my siblings had any till they were in their 30's which meant that we were all under the same pressure for a while from extended family and friends.

    If I am asked nowadays in more detail, then I just say "I'm not one the lucky ones who could have kids.". Then I smile at them shrug my shoulders and say " I am a great Aunt though." and change the subject.

    The risk of IVF vs Hydrosalpinx is only there while you have fallopian tubes in the plumbing. After you have had surgery on them to remove the blocked ends, and tried to conceive the natural way, if that is not successful, then have the tubes removed, thereby removing the hydrosalpinx risk.

    And it's straight on to IVF from then on. Though given your age, you might want to skip that trying naturally method, have the tubes out and go straight to IVF.

    The ovaries are remarkably resilient little beasts.They can survive several coatings of adhesions and can be cleaned up and still work. They can get glued to other organs and moved in the strange positions but still be working.

    And there is life after finding out you've given it more than your best shot and it is not going to happen. It isn't the life you were raised up expecting to have, but throughout life we have to adapt to changing crcumstances and make the most of the opportunities we do have.

    If you've considered adopting as a possible route to having a family, then start that process too.

    It takes some time, and 42 is the cut off age in some areas, and you can always back out of that if in the meantime you do become pregnant and have not yet had a baby placed with you and your hubby. Even if you do have an adopted baby placed with you and you do get pregnant, it's no different to having two natural babies very close in age.

    I don't think there is anyway to stop people making enquiries and trying to 'say the right thing' but causing you emotional turmoil everytime they do. You can cut the number of times down, by telling them straight away that kids are not on the agenda, or something along those lines.

    Even if they are a much wanted and planned for addition to the family, and you are doing your level best to make it happen. You can keep that to your nearest and dearest.

    I was quite surprised when I did my family tree, just how many women in the families of my ancestors did not get married, did not have children, and grew to a great age. Loads of them in fact. I can remember several maiden great aunts looking after me when I was little. Great ladies. One in particular always sent us a new book each x-mas and birthday. I still have them all, because they had such lovely inscriptions in the front covers.

    Often staying at home with their parents, or moving in as housekeepers to other siblings who had more kids than they could cope with. It's not a new thing, to be expected to be married and have a family, and there is always this stigma about not having kids, which is just cruel and so unnecessary. Most of the world relies on Aunties and Grannies to help raise the next generation as much as it does on Mums.

    There's no shortage of kids needing guidance and parenting, and I'm not talking about adopting here. just finding ways to be involved in the raising of extended family kids and sharing your expertise and knowledge and helping them grow in to responsible educated caring and sensible young adults. If they have learned that you are a good role model, and reliable, then hopefully when they too have families one day they will still rely on you to be there to help out.

    Women without kids who look after other people's kids and help rise them are the unsung heroines of the human race in my view.

    I am keeping my fingers crossed for you, but also it is good that you are putting a realistic spin on your emotions at this time. There is a whole world of good you can do, if pregnancy doesn't work out for you.

    even if adopting in to your home is not an option for you, you can still sponsor children overseas if income permits, or volunteer with brownies, cubs or local school literacy clubs and all sorts of other ways to share your life and skills with children and enrich their lives and yours.

    It's all too easy to become consumed with the desire to have ones own children, but for many that is not going to happen, and yet they still have an invaluable contribution to make to the lives and welfare of children.

    Oh and if you do have baby no.1....... you'll still be pestered with

    "so when is the next one coming along?" ...you can't win, whatever you do.

    and I'm as guilty of the last one as anyone. When my siblings did start having their babies, I couldn't wait for more to arrive. Yet with each new arrival a touch of jealousy and disappointment it wasn't me. But I still love them all to bits and am a huge part of their daily lives. I also look after the kids of friends of mine, when they are really struggling to cope with work and school holidays. No shortage of kids in my life now, and they are all growing up so fast.

  • Many thanks for your kind and well thought out response. A couple of little points: have tubes removed and go directly to IVF is not an option the NHS will offer. They expect me to try for one year after tubal repair, then go to IVF if an HSG shows no hydro. If I have a hydro by then, it's time for more surgery.

    Also most adoption agencies won't let you start the process until 2 years after any fertility treatment, so that's not an option yet. I didn't know there was an age cut off though, I'll look into that.

    So many of your points ring true to me, and it's funny I was only thinking about family tree single ladies recently. I am not sure I can deal with the idea of being around lots of kids then sending them back off to their parents though, leaving myself alone. That will come with time perhaps.

    Thanks again for your time and words, appreciated!

    Take care x

  • I am sorry to hear that they are forcing you to go through the tubal repair step first, but perhaps they feel there is strong chance of success doing that. I don't quite understand their logic, but then the NHS works in rather mysterious ways.

    And I really do not want to rub salt in the wounds, but the quicker you start finding time for the little people in your circle, the better it is for you. It does give you consistency over time, kids build up relationships over time, and they do grow so fast.

    And they are great listeners without judging too much. It also helps them to know that having a baby for them will not necessarily be a straight forward exercise either.

    Furthermore, it really does better prepare you for the responibilities of motherhood or auntiehood. Volunteer to take out nephews and nieces or friend's kids and give their parents a break, baby sit for free at weekends, You'll have to do that yourselves if you become parents, and finding other parents who are trustworthy can make such a huge difference in terms of support while you go through what you have to go through.

    By interacting with other families, it does broaden your horizons whatever the outcome of trying for your own baby. You can learn so much, what not to do and what are good parenting ideas. Reading all the books in the world is no substitute for actually being hands on with caring for kids....AND being able to hand them back when you're utterly exhausted is no problem whatsoever. it's a pleasure believe me. LOL.

  • I do understand how feel , people do ask these questions , just to make conversation and believe it or not it is how our society make conversation. Some people try to comfort U in some way by saying that women do get pregnant even with lots of problems etc etc

    When I told my mum about endo and possibility of infertility , she told me that people without children have better life and happier ))))) That was amazing , honestly , not every one think having kids is fun .

    Any way stay strong girl ! And please don't get angry at me, I do know about pain ( 3 laporoscopy etc etc ) and I did manage get kids too . U will have them too , if not it also good .

    Wish U better , God bless .

  • Hi, I know exactly how you feel unfortunately I've just found out I have hydrosalpinx so will need tubes removed and then discuss IVF. At the moment I don't know exactly what my options are as got to wait till May for follow up appointment from lap. If you can try naturally first then I would think its worth a try, having been told I do not have this option and can't afford private I'm guessing ill only get a couple of trys at the best so if you can try naturally before jumping to the last hope then at least you will have more chances? Maybe I'm wrong but I try to think positive and if there was a chance I could fall pregnant before I have tubes removed I think I'd give it a try. It's your choice and you have to do what feels best for you.

    As for dealing with other people I generally reply with... Well I have 10 nieces and nephews so they keep me busy enough for now! The conversation normally then changes to discussing them instead and stops me having to explain any further!

    I hope you have some luck and maybe they will unblock your tubes and you may not get hydrosalpinx but if you do and your tubes need removing then your chances of IVF will be better without the tubes and then if you still have no luck adoption is always an option. I have always thought that maybe I'd adopt one day and that's what will keep me going because even if I don't have my own child naturally i will be a mum one day to a child.

    Stay strong and try to think positive x

  • Hugs.

    It gets better, once you are in your 40's people do stop asking (also, their kids have often turned into teenage monsters by this time and they would much rather change the subject!

    I know I sound a bit flippant, but when I look back I was so unhappy trying to conceive, it all just got ridiculous. I even stopped wearing perfume and using hair dye to try to improve my chances. It was all such hard work that the day I decided to give up was a huge, huge relief,

    It just doesn't happen for some of us, and in a way I wish IVF etc didn't exist because it would have been easier to accept earlier, I think. Now, if you don't put yourselves through 3 rounds of IVF then you're not really trying and there's always one more chance for that miracle.

    Having said this, I have several friends who had serious fertility issues, and yet they were successful. One of them even had two boys when she was told she had no chance.

    I will be thinking of you and wishing you success, but you know, if it doesn't happen it just means you take a different path, not worse, not better, just different. Best of luck with it all.

    xx

  • Maccerpops,

    I'm sorry that it seems you will be unlikely to conceive - and I'm not trying to be cruel, because you said that you wished someone would say it. I feel the same. I also wish that someone would say it to me, another unlikely case of conceiving (in my PCT area I get two goes at IVF and then that's it, finished - because I can't afford private treatment). Endo sucks - and that's my pleasant version of what I think of it.

    I'm sick to death of being told "it will happen to you" and that "everyone's there for me". They are not, because they have all their children.

    Frustration and injustice aside, my IVF begins this year and I've been waiting two years to get to this point (that is if one my ovaries isn't removed before then and I might punch someone if I'm told AGAIN how "thousands" of woman successfully have IVF with one ovary (and endometriosis?)).

    Though unlikely, I'm not giving up hope of becoming a mother of my own child. I'm trying IVF, and as long as I am trying, there is a chance I might be one of the successful ones. That's what I'm trying to keep hold of - yes, the odds are not in our favour - but if I'm having IVF like every other patient, then there is the SAME chance I will conceive - just the same as the rest on the IVF list.

    And if I can't get pregnant? I will feel like I've let my husband down in the worst possible way, but that's MY paranoia and not his. And all this potential heart ache and pain every time I see children (which is just about everywhere), is it worth it in the long run? Even after everything I've just said...

    ...it's still worth it. After all, a Mother defends and protects her children for the rest of her life - my role begins now, before the birth or adoption of my child.

    Good luck.

    Elizabeth.

  • What I don't understand (and no offence to those of who who have mentioned it - with the best of intentions) is why people seem to think that adoption is the logical solution.

    Adopting won't stop me from hating seeing my own breasts in the shower, as they remind me of their uselessness and that I will never know what it is like to feed a baby. Adoption won't take away my husbands anguish that he will never have his own child.

    Not just that, the process is extremely hard and our chances of being accepted and getting a baby are probably about the same as my chance of conceiving i.e. very little.

  • I am so glad to read your post!! I was diagnosed with Endometriosis back in 2008. I had a Lap where they found 3 patches of endo and a cyst on my left ovary. I cannot have the coil or injections to control it as my body rejects it and makes me throw up! Therefore, I have to take the Pill continuously to control the endo-which kind of makes getting pregnant impossible! My Gynae Consultant has told me I have until I am 35 to try and get pregnant and then my time is up. I am 32 this year,so I guess the clock is ticking!!

    I too am sick of people belittling this condition and making out that 'everything will be fine' and many,many stories of people who concieved after being told they would never have children. Every woman is different and every woman's endo is different.

    My Husband and I tried to go through the Adoption stage and failed at the second level. I cannot explain how hurtful and upsetting this was.

    Endometriosis is a horrible condition that not only affects you physically because of the pain,but also mentally. Every day I feel like a failure. I do not complain about the pain to anyone,but sometimes I do just want to sit and cry.

    Wishing you all the best,it's good to know there are other women going through similar expriences. Big hugs xx

  • I am not a fan of being positive for the sake of it. I prefer quietly hopeful while acknowledging the anger and sadness and downright despair we sometimes all feel. They don't go away if we ignore them. Big hugs and my very best wishes to you. Anne x

  • My standard reply to busy bodies is 'I'm a teacher...best contraception ever!' ;) I am fine with my infertility, others can be idiots. A wonderful husband and few good mates that understand, as much as they can (when annoyingly fertile) is just fine.

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