i am having secondary fertility issues following my first child (born 2019), and have now had x5 unsuccessful embryo transfers (x 3 failures, 2 miscarriages).
I have had very painful periods since giving birth, bowel movements in particular are painful. My pain seems to be worsening and is no longer just during my period.
I have had several transvaginal scans which have been shown as ‘suggestive’ of adenomyosis. I have had two hysteroscopies which were apparently normal. I also had a diagnostic laparoscopy which showed mild endometriosis. During my last miscarriage they couldn’t visualise the embryo due to the (likely) adenomyosis distorting the view (embryo was there, but not viable). I have recurring fluid in my womb. Recently I have been advised I have developed two small (suspected) endometriomas on my ovaries.
This has all been done via the IVF clinic. I have never been given any information about managing the conditions, any firm indication of the stage, or any adjustments to my IVF protocol bar a month of down regulation.
i just wanted to sound out whether this sounds right. Is there more they can be doing fertility wise? Or more I should be doing to push for specialist treatment or advice? Would the laparoscopy have looked at the bowel (which where my pain is worse) or is a different procedure needed? I’m more coming at this from the fertility angle though obviously the pain is worrying if it continues to get worse.
thanks very much for reading.
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I have endo (suspected stage four involving bowel) and Adeno. I do not have any children yet, cannot TTC due to severe pain etc. Currently waiting for first laparoscopy to unstick organs.
From the extensive reading I have done, studies have shown woman with adenomyosis are unfortunately more likely to miscarry/not carry to full term. Can’t even fathom how hard this is to go through.
I’m seeing this on here quite a bit lately… but if scans are showing signs of endo/adeno I think a gyne would normally offer you hormone treatment for a little while before IVF to make sure you’re in the best possible place. Could absolutely be worth getting an opinion of a endo specialist to see if removal of endo would help (I wouldn’t bother with a general gynaecologist, for the most part - in my experience, they’re no use).
So sorry to hear of your experiences and wish you all the luck with the surgery.
That’s interesting, re: hormone treatment. My consultant is just suggesting one month down regulation which we tried once before and didn’t work. Infeel like I am learning this the hard way re generalist gynos… I can’t fathom why they don’t just routinely refer you to a specialist as soon as endo is suspected.
I’m really sorry to hear about your unsuccessful transfers & miscarriages too, I went through the same process 9x so appreciate your pain, frustration & desire for more help.
A decent sonographer will identify adenomyosis in a lot of cases. I had a normal hysteroscopy at the height of my severe stage IV recto-vaginal endometriosis obliterating my body so I’d take any ‘normal’ result with a pinch of salt where that scan is concerned.
Your diagnostic lap may only be telling half the picture and I have heard of occasions where an initial lap has not uncovered the full picture, it does sound to me like there is more going on which should be investigated.
While I’m not blaming IVF clinics, from a lot of experience of 3 different private clinics, endo and adeno seem not to be that high on their radars. (I had treatment throughout 2015-2020). Their knowledge of both these conditions, in particular adenomyosis and it’s related potential complications with conceiving, as well as what can happen further down the line if a potential pregnancy happens, fell very short of my expectations and, in my opinion and from experience, I do not believe they are the best placed to be giving you the specialist endo advice you evidently need so much right now.
I was given no guidance as to adjustments re IVF protocol, was just expected to plough on through, that seemed their soul aim, despite me evidently having severe endo/adeno issues which undoubtedly affected the ivf outcome. Sadly, it eventually fell to me at the end of the day to take the heartbreaking decision to withdraw myself from the ivf programme I’d paid for as I did not believe they had my best health interests at heart, they were very much set on the end goal of achieving a viable pregnancy rather than the bigger long term picture, which, I can totally understand as they are in the baby making business after all and not the endometriosis specialist business.
Yes, I believe there is FAR more they could be doing to support you fertility wise, the issue arises is that sadly they don’t have any directive wherethey have to - and there in lies the massive problem. They don’t take enough responsibility in my opinion. Endometriosis is one of the key conditions causing infertility so surely they should be taking it far more seriously than I’ve certainly seen in my experience.
I signed up to one of these money back ivf programmes and it was me who really pushed the point how serious my known endo & adeno was, making it very clear I even didn’t believe I’d ever get pregnant I was so unwell - they seemed not to batter an eyelid at the time, I suspect the financial gain was sadly more paramount and that issue grew to become the reason for me deciding to end my fertility battle as I had to take the responsibility they should have done and put my health first. I was in no condition to get pregnant, let alone look after a new baby had one come along, and that is the one of the hardest decisions to have made but I know deep down it was the right one, it was just incredibly disappointing - but far more worrying - that the fertility clinic didn’t see it that way,
If I were in your position now, if time is of the essence which is problem is, I’d be contacting a private endometriosis consultant (which is possible to do as I’ve done it myself) see them and perhaps even an MRI may be useful which could help indicate a potential bowel involvement as I would suspect something is going on there by what you say. I can totally appreciate how the fertility aim is of paramount importance for you and it’s very easy that that can take full priority, but I think if I were in your position (which I was to some degree), I’d step off that fertility train for a month or two and look further into the endo/adeno picture as, from experience, you aren’t going to get that specialist advice from an IVF clinic. I don’t want to bash these clinics at all, they make people’s dreams come true and offer hope to millions, but I’m purely speaking from the point of view of an endo/adeno sufferer going through what felt like a big financial machine where other health concerns didn’t seem to attract as much attention as they should have. Maybe it’s just bad experience I’ve had, but i have come across similar stories. I’d seek specialist endo advice going forward but just my opinion. I sympathise greatly with what you’re currently going through, it tests you to the limit doesn’t it and I hope you can achieve another successful pregnancy at some point very soon, wishing you all the best x
I’m so sorry to hear of your experiences - hope things are much better for you now ❤️.
Whilst my pain is currently manageable, your experiences with fertility clinics echo my instincts and experiences (to sum it up I requested my medical records and it turns out that they’d known I had endometriomas for a while but had implied to me they were functional cysts, so I had no idea, no thought that this might be useful information for me to know! It’s only because one now looks unusual and they need to rule out cancer they bothered to mention it).
That’s so useful to know that laparoscopies / hysteroscopies don’t always uncover everything, and your advice around how to approach contacting a private consultant is so so helpful 🙏
Thank you for your reply, unfortunately still battling like a lot of others - It never gets any easier does it!
Well done for getting copies of your medical records, it’s very telling that they reveal one thing while what you’re told is very different, that sadly doesn’t surprise me.
Yes, i was amazed nothing showed up at my hysteroscopy, not long after I had a diagnostic lap and was in for 5hrs as I was obliterated with severe endo so it just shows.
I’ve had almost all private treatment, as my case was too severe, however, I am aware of instances where initial nhs laps have not uncovered the true picture. You ultimately must trust your gut, remember you know when things aren’t right and ensure you make yourself heard and push for answers to all your questions. Don’t put consultants on pedestals, they’re not all as good as they think they are!
We must be advocates for our own health, I researched consultants and approached one direct, writing a brief history of what I’d been through and his secretary called me to make an appointment (this particular consultant would not see anyone unless very severe endo was suspected or already diagnosed) another consultant I researched I was able to access his diary direct on the Spire website and was free to pick an appt time and date I wanted as a new patient consultation & the process was easier so it all depends on consultant I guess. I also saw one consultant I arranged a private consultation with before requesting I be moved to his nhs list for a lap so there are various routes through. One thing I did find useful was to write a brief summary of where you’re at, any treatment/surgery already done/what’s worked/hasn’t worked/a brief timeline if you like of your symptoms /any patterns you notice etc and even send that through to the consultant’s secretary prior to your meeting. While they may not all look at it, some do, it shows you’re taking responsibility and sometimes adds a bit more weight and pressure for them to take you seriously!
That’s a really good shout re writing things down, I will try that! I find the health advocacy a struggle, it doesn’t come as second nature and it feels uncomfortable going against what my consultant has said when I’m not an expert, but trying to get better at it! Your advice and this forum really helps!
I just wanted to comment on Sez73 ’s suggestions. I’ve recently opted to go down the avenue of private referral for diagnosis and lap treatment if my endo. I specifically searched out someone with an endo specialism swap practiced excision. It was an MRI that definitively identified my adeno. However from my personal experience and reading a lot online, endo specialists are not well placed to give advice and formulate a plan on future fertility persuits. In fact my endo consultant said the only recommendations he could make were for specifically managing fertility he endo and adeno, and certainly for adeno none of these options allow for fertility treatment. He couldn’t advise at all about what my fertility options were. Tangoandmax what we have to do is seek out a fertility doctor who specialises in endo. Rahi Victory is on Instagram and YouTube and shares a bit his recommended endo protocol, and there are a few great Facebook groups where women share their protocols. What seems to be common is a longer 2-3 month down regulation, sometimes with oestrogen being then checked to see if it’s below a ln acceptable level. Then often letrozole is added then before FET prep.
That’s incredibly helpful to know. It’s such a minefield trying to figure this out. The consultants at my clinic all position themselves as having expertise in different areas of infertility and my case has been brought before their panel before now, but they have never suggested anything beyond just the very standard IVF protocols.
Will check out Rahi Victory and hunt for facebook groups (any specific ones you’ve found useful?)
I think I probably got very lucky with my consultant as not only was he an advanced endo surgeon but he had also worked in fertility clinics for a number of years & in Obstetrics so was very well placed to give me a wider view which was really helpful. Appreciate not all consultants are the same. I was really just advising that from experience, I felt it necessary to explore the impact of endo and adeno further after repeated ivf failures and so I was speaking about going to an endo specialist esp as bowel endo had been mentioned by Falafelrovers. I wanted to find out how when my bowel was adhered to my uterus and both ovaries whether that would be dangerous in a pregnancy/whether that would impact a pregnancy etc and I found my endo specialist knew more to comment on that. Obviously you’d really hope ivf clinics would know more regarding specific protocols to use. Sadly fertility treatment and endo/adeno treatment are polar opposites and will not easily go hand in hand very well! IVF drugs will flare up endo and endo treatment will have an impact of fertility, it’s a very fine balance which is very challenging to those stick in the middle of it. I appreciate not all endo consultants are the same, in an ideal word they’d all know a bit fertility and all ivf clinics would be experts on endo making it much better for us patients! There is no one size which fits all, one protocol will achieve success in some cases but not in others. I tried a lot of different protocols including ones which aren’t done in this country, and all failed, I reached a point of concluding my body was just too ill battling endo to be able to sustain a pregnancy. One of my consultants helpfully showed me letters from some of his patients who had had the similar very long major surgery I’d had and it was really helpful to read their experiences on their fertility journeys, however what was most helpful was reading how their advanced endo and adeno had affected their pregnancies and births. It’s all about information gathering and reaching an informed decision. I felt I had to stop my own fertility journey and put my future efforts into trying to get more well to live a more enjoyable healthier life for the future, deep down I seemed to know I wouldn’t be able to have it all. Hopefully one day soon fertility clinics will have a lot more advice to give endo/adeno sufferers, as I realise not everyone will be able to get the combined advice I was able to get from one surgeon.
Yes it helped to some degree at that time, however he has since long retired unfortunately, don’t get me wrong, I still spend a significant proportion of my time every day trying to figure out what is best to do with regards adeno and endo like many others on here. We shouldn’t have to trawl through a minefield of info online, we’re not doctors after all yet have to try and scramble through trying to find out answers on what is the best way forward. It shouldn’t be that way but unfortunately it is, that’s why forums such as this can be very helpful as you’ll at least get access to others in similar positions whereby they may have found some info you’ve not come across which is helpful, it also helps to spot patterns, get reassurance re symptoms and feel you’re not alone in all this. I just wish that the thousands and thousands of hours I’ve spent online, over the last 20 odd years, trying to find a way through and some answers had proved more useful to me!
very sorry to hear your story and the position you’re in. I have endo and two failed ivf cycles under my belt (endo was only diagnosed when they found a 2cm endometrioma on my ovary in the 2nd cycle). I’m in a similar position where I can’t ever see IVF working , I’m in the process of getting a GP referral for endo, but could take up to a year. The NHS fertility clinic (that I have two more transfers with) just seem to want to crack on. I did find this Insta video helpful though - which is a convo with an endo specialist and a fertility doc - instagram.com/reel/C5X-MY1P...
I took some comfort from it! Really hope you get some success x
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