I had an appointment with my BSGE consultant. I have complex and extensive stage 4 endo, with adenomyosis.
I'm 42 and was only given 5% chance of IVF being successful.
I feel numb, to what to do. Have the op to remove the disease that I'm on strong pain relief for, or have parts that don't work, like one of the tubes, but at least gives my womb a chance, to try for a baby, but endo will not be removed.
Or do I have the everything taken out, to have a better quality of life.
I feel torn and broken, to what to do....
Any one been in the same position....
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Jasmin24
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I do feel for you a lot having been (& still am) in a v similar position. Stage IV complex endo & adeno like yourself. I’m 47 so can maybe help give you a perspective from someone a few years further on from you which may or may not help. I threw myself into countless IVF cycles from 39 onwards. These cycles were attempted at times post endo excision surgery and at times when I knew my endo was rampant again. You just want to try & do everything to become a mum and what it’s doing to your poor body & mind gets left behind as you’re on this mission. You’re kind of on this interminable treadmill throwing everything at yourself to try and make the big dream happen. None of my IVF cycles we’re successful & I went in with good FSH levels/good progesterone/all good on paper yet no success to ever get to Day 5 let alone day 3 transfers. It took a huge toll on my body, flared up the endo & adeno a lot and I just seemed to lose years in a haze. Turned to DE route & got pregnant first time but miscarried at 6 weeks. I chose as natural a route as possible with no drug intervention with frozen transfers to help try and not flare everything up. On one attempt even taking extra progesterone as a change made things worse. Suffice to say I think u reach a v hard point where if u tune in and listen, u know your body is telling you it’s had enough. I was at the crossroads you find yourself at now and elected to throw myself into more IVF, more surgery to excise endo & give me the best chance but nothing worked and I know it put me in a worse position physically & mentally. With lockdown and battles with the fertility clinic we used (who made 2 fundamental mistakes costing me two frozen embryos) I’m, like you, at another crossroads of going is it time to completely stop and call it a day and even at 47 it’s no easier a decision to make, despite you acknowledging the practicalities of having a baby late on in life, combining it all with the issues which start coming into play with peri-menopause too. I tried to look at it by removing the emotion out of it and putting a completely common sense head on and I know the right answer is to elect for a better quality of life now and build a life without kids which was never part of the plan but you have to start finding a point where you stop fighting it sometimes. Don’t get me wrong, I’m still not 100% there by any stretch and with 3 DE embryos in storage, that call to say we will no longer go ahead seems an impossibly sad end to a 10 year journey & I can’t make myself make that call yet, however I am now starting to realise that by delaying that call just paralyses you and keeps life in a horrid foggy limbo. At some point you must jump, whichever way, u must move, otherwise you stay in limbo. I started reading medical articles on the risks of stage IV deeply infiltrating endo and adeno on pregnancy and it was a big wake up call for me & it started to open my eyes to what could cause a lot more issues ahead were I ever able to carry a baby to term. I think my partner and I have started to try and think more practically, what if I was really ill before or after the baby was born/how would we cope/are we potentially doing something which will not actually turn our lives around after all. I guess what I’m trying to say is it’s all a process and no stage is easy. Yes you could have excision surgery prior to IVF to perhaps improve your chances but u must also acknowledge that chances of low. Yes people can get pregnant naturally at 42, my sister did, but she did not have endo and adeno complications which undoubtedly and sadly work against us. I battle everyday thinking about going for a full hysterectomy and (possibly) getting a quality of life back but with so many assoc issues from endo surgery I doubt I’d ever be pain free and I guess there is no guarantee that hysterectomy is some golden solution to make all our pain go away. Surgeons think it is but there are plenty of ladies on this forum who still have pain issues post Hysterectomy.It is a total minefield and while I wish I had the answer for you I hope that hearing from someone in the same position offers a little comfort. My advice...choose a route soon and go for it and don’t get swallowed up for too long as u look back and realise years of your life have gone and that’s a hard pill to swallow. No route is an easy way. All I would advise is if there is a little voice somewhere in you going ‘I’m not sure how much more of this I can take’ then try and give it some attention and walk through a different path, consider how scary a new way of life may actually be. I am truly devastated not to have been able to have a baby of my own, but I knew I had to become more realistic and sensible about how that dream can have a v destructive impact on other areas of life and my own health. Don’t get me wrong, today I’ll think I need to make that call and stop it all, tomorrow I’ll have a well feeling day with less pain and think ‘maybe we could do this’ it does not get any easier but all I know is you have to pick a way and do it and not prevaricate and that can easily gobble up years of your life. From your age at 42 to mine at 47 feels like a blink of an eye to me as I’ve remained engulfed by indecision and it eats you up. Whatever you choose, I wish you the very very best. Remember, no decision is the wrong one if it’s right for you. x
I'm so sorry about your journey. It's being stuck between a rock and a hard place.
I haven't slept since yesterday's conversation., it's tearing me apart. The consultant was nice, very honest, but I just feel cheated, and it's not fair.
My boyfriend doesn't want to try, knowing if IVF fails, then I would be in a worst position.
Thank you sharing your experience, it was heart breaking to read, but helps you know. I currently just sitting, still thinking, because which decision I make, its going to break me. x
I suffered all my adult life with endo without it being diagnosed, stared really pushing doctors to find out what the problem was age 35, diagnosed it myself aged 47 and paid privately to get it officially diagnosed. By that stage I needed a full hysterectomy and it has taken me about 5 years to get my health back on track.
Had I been diagnosed earlier, I would have opted for a hysterectomy and would have adopted. I'm now too old for that, I missed the chance to have kids, to have that joy of bringing them up. Maybe you feel the need to have kids that are biologically yours, I never did (possibly because I felt my gynae system was bad all my life). I think you really need to consider getting your health back and adopting. Talk to people that have been adopted and parents that have adopted, get an idea of what challenges and benefits there are.
I was diagnosed at 34/35 years of age. It was a long battle for someone to listen to me. I was plagued with it from tbe moment I started my period. No doctor listened to me.I had privates scans and MRI for someone to believe me.
I had stage 3 endo with adenomyosis then, now I have stage 4 with adeno. The endo has grown with adhesions pushing onto my lower back, causing me unbelievable pain sometimes.
I have always been maternal. The hard thing is I work with children, which makes it's even more harder.
My boyfriend spoke of me just adopting to fill the hole but I have to think about it. It's harder for a man to understand and even harder for outsiders to understand.
I suppose endo controls and destroys you and your dreams.
Hallo! I totally agree that you need to listen to your body, equally I imagine you might be haunted by ‘what if?’.If this IVF is available to you, you may ask yourself why not do it?
If you go ahead, do it with your eyes open:
- Be realistic - at 42 your chances are very slim. We also had a low percentage of success, although I was 37 when I started.
- Have a limit (mine was 3 cycles because that was the number available to me on the NHS), and be prepared to stop after that.
- If private, how many cycles can you afford without breaking the bank? Remember you still need to pay bills, and afford to look after the baby if you are successful.
- IVF takes a huge toll on your body, both physically and mentally. I can’t emphasise this enough. I had an extreme reaction to the follicle stimulating hormone injection, which I believe has affected my body long-term.
- Make sure you discuss this all with your partner and that they support you when you’re faced with tough decisions. The last thing you want is conflict and guilt when you’re vulnerable.
- Listen to your body each cycle. You might decide only one cycle is enough, and that’s ok.
In the end, my 3 cycles failed. When faced with more options (egg donation from Spain, or adoption) we decided to stop (the egg donation would still have been invasive as they would have implanted the embryo in me. My body couldn’t take any more, plus it would have involved very expensive self-funding). We’re happy being childless, 7 years on, and I think it helped having tried the IVF.
Everything you have said is true, I will have to really think about it.
Do I go through the turmoil of trying ivf, knowing success rate is slim, as my body won't cope or try at least once.
The consultant did say removing one tube, may help me, but its not guaranteed. I am booked for surgery for the June 3rd, but he wants me to think about it, say we can move the op further down, just so i make the right decision for me.
So I suppose that's what I am doing.....but struggling.
But thank you, you are right, make a decision of how many ivf to go through, if I choose to. I suppose I thought trying for two, but if my bodybis saying otherwise I suppose I have to choose ivf over a better quality of life.
Hi Jasmin, I'm going to be facing a similar dilemma. I'm nearly 42, and I have stage IV endometriosis, and have had an initial appointment with a gynaecologist and colorectal surgeon at a BSGE centre, as well as an MRI scan. On Tuesday, I'll have the follow up appointment with the gynaecologist where he'll tell me my options & make a recommendation. I know it will be somewhere between excision of endometriosis and full pelvic clearance with total hysterectomy and oophorectomy.
I had trips to A&E for endo pain, before I knew what it was.
I am now on decapeptyl for chemical menopause, tibolone HRT add-back, diclofenac anti-inflammatory, Duloxetine for neuropathic pain, and paracetemol.
Like you, I just had an appointment at the fertility clinic. Due to my age, I'm not eligible for IVF on the NHS (due to age-related low estimated success rate).
Will these reproductive body parts stay, or will they go?
My husband and I tried for a pregnancy since we married -using the calendar, using the estrogen & LH tests to choose ovulation time for the baby-dance, but with no pregnancy for about three years. So, we wondered if there might be a health issue that was preventing pregnancy.
We've had some time to think over this, and decided to look into adoption. In a way, this has released pressure on me because it "decouples" the concept of having a child from the endometriosis health problems I have. It means that I am free to choose the surgical option offered with the statistically highest chance of reducing endometriosis pain.
I know this may sound all too calm and rational when I'm talking about the potential of "evicting" my uterus. It's hugely emotional. I'm nervous, scared, hopeful, anxious, sad, annoyed, and maybe even angry about endo and what it's doing to my body.
Anyhow, I wanted to let you know you're not alone.
Bless you, yes like you have made a couple of trips to A&E as I seem to get infections when I start my period, making it unbearable.
I spent 3 weeks in December, I went in with multitude of problems from infection, adverse reaction to meds and Bells Palsy, which may have been caused with everything going on with my body.
I had slurred speech and weakening to the right side of my body. I use a walking stick to help me arounded now.
I'm scared, heartbroken, numb, just going through alot of emotions, trying to make a decision. My boyfriend doesn't want me to go through it, but I want to try,....its just the buts and what it's.
I'm currently on morphine for pain relief, alongside every other drugs to keep my going.
Life is cruel, I blame the system of GP's not recognising, and helping with diagnosied and directing you on to the right health pathway. I never heard of an endo specialist until a few years ago. So the pervious ops I had was done by a normal gynae....why were these options of health care not available to me earlier?
This website is up, but why is this health condition not taken seriously?
I wished one MP read the experiences of women on this website, and listen to what we are saying.
I'm going off on one, I'm angry, very angry and annoyed.
Just read through all these posts, its so heart breaking to hear what everyone is going through. I was diagnosed with endo (potentially stage 3) with adhesions, and adenomyosis 6 weeks ago and have just been crying my eyes out. I am 40, had 2 miscarriages from natural pregnancies in last 3 years, low amh and afc. Really deperately want a family, a baby with my own genes. De isnt an option for me as as it wont satisfy why i wanty own child. I spoke to my endo doctor and he said that if my ovaries are fine, he thinks i can keep on trying. And that a laproscopy isnt a risk less procedure. My fertility doc said that sometimes laproscopy doesnt even make a difference and that they advise people to go ahead with ivf unless the ovaries need draining.
There are so many horror stories out there where docs left it too long and things got worse. At the same time docs kp telling me, having a baby is the best remedy.
I really dont know what to do whether to go ahead with an ivf cycle or get the laproscopy done first.
I can't advise you, but I'm sure someone on here will try and help you
Hi - I’m not in the same position in that I haven’t wanted to try for children but just wanted to say I read your post and my heart really goes out to you because it’s the worst decision to make. Myself and a friend have both been offered inducing menopause in our early 30s but it definitely just isn’t fair for people with this condition when these are your options. I know you probably feel time isn’t on your side but maybe just take a bit longer to decide and look at all your options, speak with your partner and make a joint decision or if you need more information, ask for another appointment to go through it again - it’s a fair whack of info you’ve had there!!
Your quality of life is so important - but then having a child sounds as though that’s part of your quality of life too. My partner and I decided a long time ago if we ever want children we would try to adopt as there’s so many children out there needing a home but I appreciate that won’t be for everyone. It’s not a decision you have to make today, give yourself some time to digest it. If you have a gut feeling on what you want to do whether that’s go for it or not - trust that. Take care of yourself x
Thank you for sharing your story. Having a child would may any woman whole, and your right having the child would be apart of my quality of life.It's such a difficult decision. My partner said just adopted, but easier said then done.
I'm going to write to the consultant, for a second opinion, but theoretical this would be my 3rd opinion. But I have to just make sure I choice the right path.
I was in a similar situation, did 4 cycles of IVF and they all failed. IVF is really tough physically and emotionally, it is all consuming and traumatic. There is life on the other side (see gateway-women). Sending best wishes x
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Feeling Undermined and Overwhelmed 
Anyone had the same?
Removal or not of ovaries
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