Currently starting second round of IVF (x2 embryos in round 1 with x1 negative pregnancy test and x1 embryo left frozen) with endo still on uterosacral ligaments, pelvis and bowel vaginal wall. Been trying to find consistent & clear guidance whether to have remaining endo removed before further embryo transfers & IVF. TTC for over 3 years now and aged 34.
Had an ectopic pregnancy 6 months after TTC in May 2021 which was very traumatic with it being COVID hospitalised alone and with adverse reaction to the methotrexate (internal rupture extreme pain and bleeding for days after it shot out the end of my fallopian tube during termination). Was diagnosed with PTSD and infertility related depression as a result afterwards. They identified a cyst on my ovary during this time which after 6 months they strongly suspected was endo.
After first diagnostic laparoscopy in late 2022 where chocolate endo cysts removed from both ovaries, was told by gynae and fertility doc to have further higher risk endo surgery. Including fertility doc saying "with all that active inflammation you will never carry a child". I queried this at the time as no current guidance on eshre or nice aligned to visible 'active' endo inflammation being a factor, contrary info RE surgery on stage 4 endo being more helpful to fertility Vs starting IVF asap at my age, and actually told me they shouldn't have operated on my ovaries in the first place as negative consequences on eggs/fertility unnecessarily. (This has been backed up by other clinicians I've spoken to since and we have raised a complaint with the hospital).
The surgery itself includes worrying risk of perforation of bowel and perforation of reproductive organs leading to life changing (i.e. infertility or stoma) or life ending results. Asked for a second opinion and referral for IVF as had been TTC for 2 years at that time (with only the ectopic pregnancy as any positive pregnancy result) with 2nd opinion doc agreeing to refer me for IVF immediately. The original fertility doc actually retired around this time too.
Had a pretty poor IVF response with only X4 eggs collected in sept 2023. Been advised likely linked to the endo and surgery on my ovaries. Was disappointed as we'd hoped IVF would be our answer but if you have 3 or less eggs they cancel treatment so we are unsure if we'll get further embryos. Have funds for this second and one more round of IVF. We're banking (freezing) our frozen embryos until we've decided about surgery as we can transfer them after the surgery.
Have decided not to continue to TTC beyond 2025. 5 years of my body going through this is my limit and life has felt on hold throughout my 30s due to it. I gave up caffeine, alcohol reduced chemical exposure i.e. in makeup or skin creams, eat really healthy & natural, went part time, quit my career for less stress, live super lean to live off my part time entry level income etc. So we've said we'll start looking at adopting after the IVF rounds.
I expect I'll end up having the further surgery down the line to ensure my bowel doesn't get invaded by the endo. But should I try and have it now? We got a referral to another hospital (with robotic surgery option so lower risk) this week and they told us not to do the surgery now as endo doesn't affect fertility unless its on the ovaries or in the uterus / tubes. But is that right? Seems misaligned to NHS and eshre guidance which does talk about enzymes etc when endo in the environment affecting implantation and total opposite of prior specialist advice. We asked for another second opinion. We really want to get pregnant and will do the surgery if needed but should we?
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Hi Pickle1988, I am sorry to hear about your loss. I can only imagine how terrible it must have been for you and your partner. I am reaching out because I also have endo (stage 4) with kissing ovaries, fibroid, 5cm chocolate cyst on one ovary and apparantly it has moved towards my bowel. I have also been trying for a number of years, 6 years. We went for a private fertility assessment a few days ago, but I already suspect my results will not be amazing because of the ovary situation. We were kicked off the NHS list a 2 years ago because of my size but I have since lost 12 stone in the last 14 months, which I hoped would improve our chances..... NOPE! I like you have also comletely changed my diet to an anti-inflamatory one, which have removed the endo pain I used to suffer from half of every month. I was told by a consultant that any surgery on that area will impact fertility. The one I spoke to told me he would excise everything, he would go hard and blitz it. It was actually that appointment that I decided to lose the weight to prevent that from happening. However, now I have a different attitude. I have a follow up apppointment next week at my fertility clinic for the results. If they tell me that surgery will increase the changes of the IVF working, I would go for. Most likely privately. Though I hope they will do a frozen cycle and get some embryos that can be frozen before any surgery. Like you i would also consider adoption once I have exhausted all options. If I was you I would consider trying to get a consultation at a BGSE centre and get surgery there. They are fully trained to look after endo sufferers. I don't have that option in NI so have to try to source a surgeon with the best looking qualifications. All the best on your journey x
Thank you for your supportive words and sharing your story too. Amazing you have lost all that weight but sorry it's not been visibly beneficial to your journey yet. It's really tough to find good clinical advice as every clinician is so specialised in one area and bias to it. We asked our IVF clinic about surgery and they hastened us to IVF and disregarded surgery. The gynae surgeon initially of course said cut it all out look I can make it gone kinda thing as that's their skill. But it doesn't feel like anyone is looking holistically at it and us. If you get good advice from your clinic please share details. We have also been considering going private for a consultation as we are losing faith in the NHS to have the resources to advise/treat it properly.
I've just this afternoon heard back from my complaint RE the original surgery and it's been very triggering. They've said it was my fault they didn't consider fertility impact as I didn't highlight I wanted to be pregnant enough and they say because I ended a pregnancy (an ectopic one which would have killed me otherwise) it implied I didn't care about my fertility. They had asked me a lot about my period pain and so they focused on that at the detriment to my fertility when they're meant to look at the whole person Inc fertility!
Due to my complaint they are adding a question to the endometriosis assessment form question "what is your most desired outcome" and if someone say fertility they will consider fertility which is absolutely not good enough. I think the process is broken. They've included a copy of my consent form which is a template from the British Society for Gynaecological Endoscopy (BSGE) which doesn't even include fertility impact as a risk to outline to a patient. Both hospitals I've spoken to are meant to be endometriosis specialist centres as accredited by the BSGE which I guess highlights it's a bigger issue. I feel it needs lobbying nationally but I don't have the headspace ATM. I raised this complaint between IVF cycles and always thought they might just say no but I never thought they'd gaslight me that it was my fault.
My fingers are crossed for you and wish you best of luck in your journey. Also just want to say this was the first time I've posted online about my journey and thank you for giving me such a nice response. It's made me feel less alone x
I'm soo sorry to hear about your loss,you will both be heartbroken.
I am 41 and I had stage 4 endo which was found after my 1st of 5 rounds of ICSI..they found a cysts on my ovary prior.to me starting a 2nd round of treatment so refused to start until it was removed,which was a year down the line due to other complications and another health scare. During surgery they found stage 4 endometriosis ,which was never really explained to me. Now i had a lap prior to my ivf treatment which had shown I had a normal reproductive system and all looked very healthy, for then a 3 years later to be told I had stage 4 endo..I don't understand it. After time I lost 7 babies (1 set of twins included).
Now after finding out my ovaries were stuck behind my womb and that my womb was attached to my bowel and bladder and my cervix was pulled back and stuck to my sigmoid colon,both fallopian tube were full of fluid and totally distorted..and I had several cysts on both ovaries, one of which was 13cm stuck to my abdominal wall and uterosacral ligaments were involved I opted for a total hysterectomy.
I was told the more they operate on your ovary they become less functional due to scar tissue. I had 3 surgery's over time due to pain plus the fact they wouldn't carry out my ivf until I had cyst removed..however after they removed them ,they kept coming back repeatedly.
It's hard to know what to do for the best when you are in this position, you want to give yourself the best chance but its just knowing what way to go..I felt I was being pulled in all different directions on what to do and I have some regret on things I had done . If your ovaries and tubes are not affected I would crack on with your treatment ASAP.. all the best of luck x
Thank you Ronsk for sharing your journey and advice. I'm so sorry for your loss and such a difficult time.
I have some tethering of my uterus to my bowel wall but they don't think there's a lot of distortion. However I am questioning things and looking into getting an updated MRI. In this complaint response they've just said the post surgery letter they sent me saying they operated on both ovaries is wrong and they left a cyst on one ovary. I need to investigate which one because in the IVF one ovary was basically not responding to stimulation. It may be because of surgery or a remaining growing cyst.
My IVF doc and latest gynae consultant said now they don't remove cysts for IVF unless it's causing it to stick to other body parts and twist things / pulling it too far away & stopping access and they drain large cysts if they're stopping access Vs surgery.
Things seem to be evolving in this area but there's still so much uncertainty and limited research. Sometimes it feels like a tombola of luck to have a successful pregnancy and your dammed if you do or dammed if you don't with decisions.
I don't want to waste these embryos and rounds of IVF putting them into an environment that they're not going to be successful in. At the same time I don't want to risk losing any level of hospitable environment through surgery. ATM I feel like splitting it down the middle and doing half of the embryo transfers as it is now and then trying to get surgery and doing the rest after if we can. But as I get more info might evolve what I'm thinking. For now I'm just crossing my fingers we get a good IVF response and some good quality eggs.
Thanks again for responding it's been really helpful x
I had a ruptured ectopic pregnancy loads of miscarriages one that went quite wrong and I was poorly for about six months after, then another ectopic pregnancy like you I gave up everything alcohol ate differently etc and I finally sort of gave up I worked part time to elevate the stress walked more went to the swimming classes etc. jumped on the trampoline at a friend's after doing the deed so to speak. We went on holiday with friends and there children we had a hot curry and had wine etc then a day later I tested positive for a baby. We were all panicking as I had been so poorly previously. And despite an early bleed where I had bed rest for two weeks I managed to have a baby. Try to take the stress away as best as you can do your body can recover a bit. Hope this helps it's very upsetting trying to get pregnant worrying about everything else. Wishing you all the very best. X
Hi Poppy sorry to hear about your pregnancy losses and difficult times. I'm so glad to hear you had a successful pregnancy. It would be amazing to have more context of your story if you don't mind me asking. What stage of endo did you get diagnosed with and did you have any surgeries or IVF? What age were you when you were successful and how long did it take you? If you don't want to share please don't feel pressured.
It's great to hear positive outcomes and I agree reducing stress is so helpful, even if unsuccessful it makes the journey better anyway x
I had nothing diagnosed although had awful pain from being 10/11 years old sick passing out bleeding so heavy. I was told it would go when I had a baby. I went on the pill till I was 28 still heavy etc but not as painful as it was then took about 4 years to get a baby. I didn't get a diagnosis till last year when I was 50 I have been going to the Dr since I was 37/39 struggling with hormonal migraines painful periods pain that I thought came when I was ovulating as I had only one side working. To be honest I think I had given up it doesn't sound long to be trying hit I nearly died with the ruptured ectopic and took ages to get back to normal then the tube came untied and I had the second op for ectopic then a miscarriage where I am sure there were possibly two babies one came away the other didn't for about six months and got that time I felt poorly and in lots of pain on and off. I had a miscarriage later on and the heartbeat faded whilst I was having an internal scan in the EPAU.
When I tried to switch off get fitter and less stress etc it seemed that my body recovered a bit and my head and we were very fortunate. Try not to give up what you have said sounds so awful for you but positive thinking actions etc can help so much. X
So sorry to hear of those traumatic experiences you went through and you suffering in pain for so long without being able to get proper support. Thank you for coming back to my questions I really appreciate it. Thank you again for sharing your story x
I’m sorry for what you’re going through, it’s really tough and so difficult to get advice from ‘experts’ as often they don’t know themselves as research is conflicting and evolving all the time. I’m in a similar situation, we have been trying for nearly 5 years and I’m now 40, soon to be 41. For the first year of trying we didn’t conceive, went to a fertility clinic and they checked my tubes which were clear, gave me some DHEA, all whilst working on diet and lifestyle. After a few months, pretty much as soon as I called the GP, I fell pregnant, miscarried and then went on to have two more miscarriages in the next six months. We went to another fertility clinic, told fertility is unexplained, had ivf, only retrieved 2 eggs, but both fertilised and both made it to blastocyst, egg quality not great and both were chromosomally abnormal. My fertility markers AMH, FSH etc have always been normal for my age (but obviously decreasing). We tried naturally again, had two more miscarriages, then had another round of ivf, long protocol gave more eggs and we ended up with four blastocysts, again not high quality and all abnormal. We saw 5 drs in total, had a significant amount of tests, one was a reoccurent miscarriage specialist and all said ‘unexplained’. I did my own research in October after my 6th miscarriage and got referred to a private endo specialist. I found some emerging research that argues that oxidative stress caused my inflammation and iron from repeated bleeding into the peritoneal cavity can cause chromosomal abnormalities from damaging the cells around the endo (happy to post here if useful), Although this is obviously not the case for everyone, as some people with endo do have healthy pregnancies, I’m convinced with all my losses and ‘normal’ fertility markers, that this has affected my eggs in this way. Also, I have to say I couldn’t go on anymore with the emotional, mental, financial toll if I didn’t try something drastically different. I’ve tried it all and also like you stopped working last May to reduce stress. I had laproscopy 6 weeks ago and they removed grade II-III endo, with bowel adhesions, a nodule on my uterus and some on one of my ovaries. Unfortunately I have no idea if it’s helped or not yet, I know my perimenopause symptoms have got worse eg my sleep in my luteal phase, but I know my bodies still recovering because of the pain in my ovary during my period (I didn’t have a lot of pain before). I can understand how difficult it must be to decide what to do next because everyones circumstances and endo is different, the grade, where it is, how it effects them and so a more holistic approach is required as you say, but whether it exists or not, I don’t know and certainly haven’t come across it. I can say that my private endo specialist is the only one that has helped me over the last 5 years (I hope), but whether removing it has helped I don’t know, I just know that trying again either naturally or through ivf in our circumstances was unlikely to give us the child we hope for.
I’m not sure if sharing my story has helped or not, but I wish you all the best and you get the care you need and the baby you long for. Let me know if there’s anything else that might help xx
Thanks Olive8000 for sharing your story it has been really helpful. Sorry for your losses and I hope this surgery will bring you a successful pregnancy soon.
It's interesting you had a better response with long protocol, we had antagonist last time and having long agonist protocol this time (had my decapeptyl shot earlier this week). The IVF doc said she doesn't know if it will be better or worse or the same as the research is so conflicting and unclear on most of these things but they have had people in their clinic respond better recently on long protocol so trying that. They've also switched my stimulation type and upped the dose.
We had 1 of 4 eggs be abnormal last time and they said that was as expected for my age. The two embryos we got were high quality and the other egg didn't fertilise. That being said of course they can't test for everything and I've seen some of the research I think you're referencing RE affect the endo has on egg quality. I was looking into this for a while and considered going abroad to Poland for egg donation treatment (same cost as reg IVF in UK) but decided we were uncomfortable with the ethics of it personally (no judgement to anyone who has done this). Which was hard as it looked like it would double our likelihood of becoming parents and I personally don't feel a strong need for a child to have my body specifics (they can match hair and eye type etc). Especially if I was carrying the pregnancy (apparently you swap small bits of DNA during all pregnancies anyway).
It's interesting you had a nodule on your uterus as that was something my gynae said this week would be a good rationale for surgery. It sounds like you made the right decision for you and your situation.
If you could please share your private endo specialist details that would be amazing.
I completely understand what you're saying about need for change. It's not the same situation but I felt similarly after trying to get pregnant with no positive tests in over 2 years. Starting IVF has been really positive as it's something happening and we're not stuck in the same monthly disappointment.
Thank you again and I hope your monthly pain resolves quickly. Please do reach out to your doc for painkillers if you feel they would help. I started taking codeine for my periods a couple of years ago and it has made it much better. There isn't any indication codeine affects fertility I've seen, though I take the minimum I can during my period and have taken it less during IVF as it makes my periods better with the hormones x
Thanks for sharing your story, endometriosis is so complex and impacts people really differently, in a way it’s no wonder the drs don’t seem to be able to get the story straight. I guess from their clinical experience there are different complications and outcomes for different people. It makes trying to figure out what the right thing to do so difficult though.
That’s wonderful news that you have some chromosomally normal embryos, but I can understand your hesitation on whether to transfer or not. It’s great to hear some other stories on here from people who have had good results with and without surgery. I’m so glad ivf has given you hope and I really hope that the long protocol works out better for you. My consultants name is Mr Raza, he’s based at the Cromwell Hospital nr Earls Court in London. He does robotic surgery and is incredibly kind and compassionate as well.
Thanks for all your support and advice. Wishing you all the best x
Hello I am so sorry to hear about your loses and struggles.
I don't have a definitive answer but wanted to share my take as some of my situation is similar.
We tried for 8 years. In they time I had 3 IVF rounds (2 NHS fresh and frozen) and 1 private as well as 2 early miscarriages. I had stage for endo with bowel perforation and general adhesions everywhere.
My IVF centre for round 1 and 2 wanted a lap done but NHS refused. After IVF 3 failed they performed a lap. Found the endo. They performed 2 more smaller lap to remove bits but no real change.
2022 I was referred to a bowel specialist and a gyno specialist at L&D hospital who found the bowel issue and had a full lap down with a bowel resection.
This was September 1st 2022. I had HRT until January and February 2023 I found out I was pregnant and now have an amazing little baby I never thought possible.
I'm not trying to say endo removal and surgery guarantees a baby etc as I am sure for lots of women it has not worked out that way. But for the first time January last year and this year I had periods that weren't crippling agony. My body doesn't hate me as much anymore and is no longer showing anywhere near the inflammation markers it was. For me surgery was key both for better quality of life and for having a baby.
Hi Kinder_Cat thank you for sharing your story I can definitely see some similarities and I'm really glad to hear you had a successful pregnancy.
You mentioned you had a bowel resection, did they need to do a temporary stoma for that if you don't mind me asking? Did they use robotic surgery as I've heard that can improve risk and reduce need for temporary stomas? I'm so glad your surgery went well it is a big one from what I understand.
I was told my bowel wasn't perforated 2 years ago when they did the MRI but they could shave it off the vaginal recto wall. I'm concerned it will invade the bowel if I leave it too long. This is one reason I didn't want to do IVF and TTC for too many years without surgery.
I also have a meniscus tear and cyst in my knee which was scheduled to be operated on before our ectopic. I have delayed this until after fertility treatment as it's manageable but limits my sports. I have hip pain on the same side which the GP thinks may be endo related, again something I've planned to address in 2025 perhaps with hormone therapy or hysterectomy if our TTC journey has ended.
You mentioned you had HRT for a few months was that to counter the decapeptyl from before your surgery or something else? You also mentioned inflammation markers, did you get a blood test or something for that? I would be interested to see what my inflammation levels may be.
I've been taking prescription codeine a couple of days during my period each month for the last 2 years to manage pain. I generally can switch it with reg paracetamol during the whole period cycle. I would like to stop that soon (again maybe a 2025 thing) as I'm sure all the painkillers are not good for my liver long-term. I've not seen evidence it affects fertility thankfully.
The quality of life topic is definitely so important and only you know what's right for you ultimately. Though it would be good to have proper information on risks and benefits so we can make the most informed choices!
Hi Pickle,Sorry for the late reply, I did not get a notification. Not sure if it still helps but wanted to answer in case!
My surgery was done by gyno and gastro team combined, assisted by robotics but lead by gastro at L&D hospital and I honestly cannot praise their gastro surgeon enough. I was prepped for a stoma bag, but didn't need one in the end. It was scary but actually the stoma team were amazing and I felt so prepared for it if it had happened.
I have limited trust in MRI as two of mine showed no endo then one was extensive and widespread. Gastro Dr told me only lap and colonoscopy would diagnose bowel effect/perforation in his opinion.
I can't remember what HRT was for if I'm honest. But most drugs post were about stopping then restarting my cycle so it could recover and slow down growth but also not have the menopause induced permanently.
Stool tests test for calprotectin. Raised levels meaning inflamed bowels and mine were quite literally of the chart where they just started putting >1200 as a reading😅
You are so right. Has to be an individual choice and informed one. I feel really lucky I was transferred to L&D gyno/gastro team as they made me feel for the first time like I got what was happening inside me and my options with it.
I really hope you get some relief or answers soon x
Gosh, you've been through do much and it sounds like you've had a lot to deal with.
I saw a private specialist in Manchester after years of endo symptoms and infertility/miscarriages and it was worth every penny. I went on to have surgery with him and a significant nodule was removed that was tying my bowl to my uterus and distorting it. We did ICSI again 6 months after surgery and it was a success. I cut down on dairy, red meat, sugar, alcohol etc but who knows what really made a difference... We're trying again now and I took Ovum supplements and was prescribed melatonin.
Finding the right consultant was everything for me. But everyone's circumstances are so different...
But I just really wanted to say good luck and I hope you find your way through this crazy journey whatever happens xxx
Thank you skygreen, it's been so helpful hearing people's stories and realising how many have had similarly difficult journeys. We are not alone even though we don't talk about this in society enough.
I'm definitely wondering if my uterus is distorted from being tethered to the bowel and affecting things. During an IVF accessibility scan they noted it was tied but the gynae team didn't seem concerned by that this week nor has someone said it's distorted when it was reviewed 2 years ago. However I understand endo can develop quite quickly so want to check it out.
Yeah I've done the red meat, dairy, sugar, and alcohol reduction or removal the last months and hoping it helps things. I'm interested in the ovum supplement you mentioned as hadn't seen that before so will ask the IVF team about it. I'm taking vitamin D and folic acid daily already.
I just want a consultant I trust, I was talking with my therapist yesterday and saying how the last years have broken a lot of my trust. It actually started when I first went to a&e with spotting after speaking to 111 a few years ago. The doc there touched my bottom in the corridor then proceeded to tell me as I'd had a light period I couldn't be pregnant (so didn't bother with a test) and I must have anxiety causing my symptoms. He told me to believe him as it would make my symptoms better. Just over a month later I went back to my GP with the same symptoms and they rushed me to hospital for the ectopic. They saw the size and confirmed it had been present at the a&e visit prior.
Thanks again for sharing your story and wish you the best of luck with this second baby x
So sorry to hear all your struggles. Infertility and endo are so difficult.
I can’t share a positive story (yet at least) but I’ve suffered for years and had a presumptive diagnosis of endo for well over a decade. I am mid 30s now. Because of concern of proximity to bowel and nerves a lap was put off. I sort of managed between diet, lifestyle and meds to stop periods. But on stopping meds to TTC past few years have been awful. I finally had a lap excision 6 weeks ago after 3 failed IVF cycles (5 embryo transfers, only one biochemical pregnancy following a transfer in 4 years of trying). It was mainly for me a quality of life issue. It was either do the surgery or stop TTC and go back on meds and hope it quietens down. However due to our recurrent implantation failure we also had two second opinion consults who strongly advised I had a lap as they believed the endo inflammation was main factor in our embryos not implanting. It did feel that my pelvis was so toxic nothing would ever stick.
I’ve had very poor egg collection results, even with massive doses, due to my endo, 1-3 eggs each time from 4 follicles. My AFC isn’t too bad but I just don’t respond to stims and that is common in endo apparently. Otherwise DH and I are both pretty fit and healthy, good BMIs, no male factor issue, I ovulate regularly and my tubes are clear. I have been found to have a high Antiphospholipid antibody (cardiolipin), and high NK cells on the Coventry implantation clinic biopsy. But again, apparently these two things are common in those with endo.
I don’t know if surgery will help us with TTC but we’ve been encouraged to try naturally for 3-6 months now and see what happens. I think I now feel that while the surgery may not help, if I hadn’t done it 1. I’d have had to stop TTC sooner as life is unbearable with endo symptoms, 2. I’d always wonder if that was the thing that would have made the difference. DH and I know this may never work but we want to come out the other side with no regrets.
One thing I have realised is, in terms of advice, IVF clinics are often the worst as they always will sell you IVF as the answer!
Thank you for sharing your story endofitall, really appreciate your kind words as well. So sorry to hear you suffered with that endo pain for so long and I hope the surgery gives you relief and a successful pregnancy.
The recurrent implantation failure with antibody & NK cell info you mentioned is something I'm interested to explore (I'm now going to look into getting the same tests done).
I completely get what you're saying about wanting no regrets. There are some things we can't change or control but what we can we want to feel we made the best decision we could.
My experience is similar in that IVF clinics are keen for us to keep buying even if success is slim and costs to us high. I feel its important to constantly assess the situation regarding our quality of life.
Thanks again for sharing and wish you all the best in your journey xx
My IVF clinic/GP did the blood tests, but then I went to Professor Brosens at the Coventry implantation clinic for the endometrial biopsy - he’s not looking to make money as it’s uni/nhs research based but it is still at this point experimental.
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