Hi everyone - long post alert update from appointment thank you so much for reading.
So we had some upsetting news at our follow up appointment yesterday (21/9/18).
My new consultant went through all the information he had including; the letter from my previous gynae who did my lap in Feb, the blood tests and the ultrasound that I had recently, and the news is not great.
He went through the letter from my previous gynae consultant which basically says that the endo is blocking my tube, covering my ovary, has stuck my ovary and bowel together along with attaching the ovary to the back wall of my uterus all on the left side. He said that based on the letter bearing in mind they haven’t done a laparoscopy he would say that my current stage 2 diagnosis is wrong. They don’t use the stages here they use the minimal, mild, moderate, severe. He said he would diagnose me as severe with the fact that my bowel is involved.
He then went on to explain the ultrasound I had a couple of weeks ago which has shown that, the left side ovary appears to have cysts, quite a few of them inside and outside the ovary and the right side may have one cyst but that the cyst could be a follicle. On a small positive note my uterus is fine. Gotta take the small wins.
Then he got the the upsetting bit. So far I was fine I was paying attention and feeling ok.
He then went through the blood tests. All were fine apart from my amh levels. He said for my age the average should be around 25 mine is 17, meaning I have a lower egg reserve than I should. So coupled with everything else I have to basically make a decision as to whether I go ahead with IVF which could have complications because the cysts and puncturing one to get to the eggs and the fact that the left ovary is a bit of a challenge to get to or have surgery to relieve the endo as much as possible and remove the cysts then go on and have ivf afterwards.
Hubby wants to give the ivf a chance he is so positive constantly reminding me that the ivf could work as we are lucky enough to qualify for 2 rounds on the nhs, his theory is to do the ivf if that is unsuccessful to then have surgery and then try again with the second round of ivf. I’m not so sure and feel like I’m stuck between a rock and a hard place. If I have the surgery when they remove the cysts they will take some of the eggs too. But if they do the ivf they will give me oestrogen which is what the endo likes and could make that worse.
Any advice or positive stories would be so appreciated right now. It would be fair to say I had a bit of a meltdown afterwards.
Xxx
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kelsbels88
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I’m really sorry that you have received such bad and upsetting news.
I think that if it were me in your shoes I would have the surgery to try and sort out as many of the problems that I could and feel like I was giving my body the best possible chance for ivf. 2 free rounds on the nhs is fantastic but if the first one fails and you then choose to have surgery you only have one free round left. At least if you have the surgery and then the first round does fail you will know that you gave it the best possible shot.
I really hope that this helps a little. It’s a huge decision to have to make. Take care of yourself xx
I’m really sorry. That’s a lot to take in on one appointment. I have no experience of Endo and I can only give you a personal opinion but if it were me I think I’d want to take the surgery first. That way you are starting the ivf with a clean slate so to speak. It’s good that your hubby is so positive however it’s your body at the end of the day and you have to go with your gut on what’s best for you. You have two shots, that’s really good! Make the most of them xx
Hi Hun hope you’re doing ok. Yeah it was a lot to take in I was keeping it together until he started talking about my amh and my egg reserves. I don’t know what to do if I’m honest, I keep going back and forth. As you said two shots is great but we need to do what’s best with them. Xx
I am very sorry to hear that you have received such upsetting news. I find it can be very overwhelming when attending appointments - you think you are prepared and then there is a curve ball coming from nowhere! My advice would be to take time to digest the information first, possibly seek second opinion. We did not meet the criteria for NHS funded IVF so had to self-fund two cycles. I would agree with your husband - you have two funded attempts, so consider seriously whether you want to take advantage of those. It is not the easy option but even pre-IVF investigations can reveal a lot of useful information to ensure the treatment it tailored to your needs. Good luck and keep us informed! xx
It’s been a bit to get my head around 😩 these test etc that we’ve had are I believe our pre ivf investigations. The next step is the referral from our consultant just 3more blood tests to do and we would be put forward. We definitely have a lot to think about xx
Sorry to hear you got that news, that’s awful you got so misinformed with previous gynae 😢
Speaking as a fellow endometriosis sufferer I would have the surgery done then IVF that way you know it has a better chance. Especially as you only get 2 chances on the NHS. Plus it’s better to be well & for before IVF, I don’t know how your endo affects you ( with mine it causes severe pain &symptons)
I don’t know the stage of my endometriosis but I’ve had 2 surgeries this year to treat it ( as it was all over my rectum I was referred to endo specialist) It’s interesting it’s considered severe if bowel is involved so I guess mine must be.He hasn’t told me very much except “ endo is all gone?!” Whereas my fertility doctor has referred to my surgery as “big” . 🤔 I was under for a few hours!
Ie your AMH sounds okay to me, Mine was only 5 @ 32 yikes 😱 I think with 17 they should be able to get quite a lot of eggs & remember it’s quality over quantity. I was told with my amh being 5 I’d be lucky to get 4 😱 I think the aim is to get at least 4 to & that gives you a better chance of ivf working ( so I’ve read online) Let me state my AMH didn’t prevent me from conceiving tho ( was a chemical pregnancy) Don’t get hung up on levels it’s more to help the dr decide on drug dose. 👌🏻
Lots of information to take in & im not surprised you are reeling. good luck with whatever you decide to do xoxo
I not defending him but I think our consultant did tell us I think it was just too technical for us to understand it all properly but laymans terms is great and as someone said we now know what we’re dealing with.
I find it really bizarre that no one has actually catagorised your endo considering how many surgeries you have had. Sounds like you’ve had quite an extensive surgery which means you may have moderate to severe but I’m no dr 😉
The fact that you have still managed to conceive with your lower numbers gives me hope and I know sadly yours haven’t stuck yet I’m keeping my fingers crossed for you after your last surgery xx
Awwwww lovely, huge hugs. I'm so so sorry you've received this upsetting news.
From what your saying and if it was me I'd have surgery first, they say your chances can increase with the nasties removed. Yes endo does love oestrogen but if you get the endo excised and not lasered very important. You'll have a longer time of it growing back as excision means it's cut from the root. By a specialist who's trained for 3 Years on endo and it's many diffrent looks. So you'll be getting the best possible chance that way too.
I know it's hard hun but at least you know now what your dealing with and that you can get a plan of action sorted. Try look at it as u actually have a diagnosis now and you can tackle that head on. And the positive of two ivf shots is amazing Also. There's lovelies that have unexplained infertilty and just think where the heck do they go from there. I know it doesn't make it easier I'm just trying to share my way of thinking when I get bad news. I always remind myself there's others in so much worse situations, and that keeps me going on strong.
You've got this hun whatever you decide and we're all here to support you. Take your time to take it in and make your plan lovely. Sending hugs and love.
Your very right my lovely I now know what I’m dealing with. I’m told not to be negative and not to think of the worst case however all of my worst cases so far have happened so a little easier said than done.
Thank you for the love and hugs they mean a lot.
It is hard and we really don’t know what we will decide, I can see the benefits of both. I feel a little like I would be doing any future baby an injustice if I didn’t remove the nasties first but at the same time we’ve wanted the baby for so long now. It’s just a really crappy decision to have to make, especially when I take into acc but that we got married and didn’t know we had these problems, I feel a little guilty like my poor hubby got trapped.
Anyway love to you how are you getting on? How you feeling? Xx
Oh please don’t think like that re your hubbie not knowing when you married. I felt a bit like that when we thought the problem was with me. My hubbie kept telling me it was “our” problem in his opinion. Then the tables turned and we discovered the major problem was with him, and I discovered that he was right, it did feel like “our” problem, and I would have married him even if I had known. I bet your husband would say the same so try to believe him x
This is what my hubby says it’s our problem and that I’m silly for trying to give him an out if he wants it (which he doesn’t) he told me to stop worrying about him yesterday. Xx
I have endometriosis and my left ovary was stuck to my bowel. Fallopian tubes were damaged by the endo so we needed ivf. I had surgery first and it was round three that was successful and I’m now 18 weeks pregnant. I don’t have a low egg reserve but my egg quality is not great but it all fell into place in the end. Don’t give up! If u need any advice or someone to talk to just message me. Good luck xx
Hi Penny thank you so so so much for your story. I can not tell you how much this has give me some hope for the future. A lot of your story is very similar to mine and it makes me not feel quite so alone with this condition. I’m sending so much love your way. I won’t give up! Xxxxx
I’m glad my story can bring u some comfort. I had surgery followed by a prostap injection and did my first round of ivf 3 months after the surgery. It’s a difficult diagnosis to get so I totally understand your concerns. I’m sending good luck thoughts your way xxx
Thank you so much that info is really helpful we’re trying to get an idea of what our wait times would be after/before surgery for ivf.
It is a difficult diagnosis but I was so desperate for a reason for my pain and symptoms that my diagnosis although not great gave me a little closure and a this is what’s wrong with me now I can move forward xx
I’m sorry you’ve had bad news. The endometriosis uk group on HealthUnlocked is very helpful if you haven’t found it yet. How long would you be likely to wait for a laparoscopy if you were going to have that first (which would be my personal choice if the waiting list were reasonable).
Wow poor you what a lot to take on board! I had to have a lsporoscopy before starting IVF and I’m so glad I did because they then knew exactly what they had to deal with. I have no experience of endo but I do have a tricky ovary that is out of place so much so I had to have abdominal egg retrieval. So just heads up If your ovary has gone on an adventure and is out of place there is other ways of egg collection other than vaginal. My first clinic refused to do egg retrieval due to my ovary’s position but I found another clinic that was more than happy to collect from that ovary. So glad they did as that ovary was the front runner eggs wise. I’m just saying this because my first clinic made me think that IVF was impossible due to my ovary position (which was heart breaking news at the time!) so I just wanted you to know that misplaced ovaries work and can be collected from!
Best of luck with your decision and your journey ahead xxx
We are kind of swaying towards surgery as much as the thought scares me a bit even though I’ve done it before it would be likely more invasive this time round due to the amount of endo.
Hi oregan_k, I can really empathise with your story and I am sorry that it was not better news. I was referred to my consultant last year who suspected endo and confirmed low AMH (I had the egg reserve of a 40 year old at 32, I think it was 7?), but her recommendation was a laparoscopy to remove the endo before beginning IVF to give us the best possible chance.
Although we are still going through treatment I am relieved that I had the laparoscopy first as the pain from the endo was only getting worse. It also reassures me that whatever the outcome of our treatment, we will have done all we could.
Furthermore it didn't hold up the IVF significantly, as after the op I had my first IVF appointment within a couple of weeks. Obviously you have to make the right decision for you as a couple, but I don't believe that removing the endo would harm your chances even with the lower AMH.
It really has. We had a six month wait for the laparoscopy on the NHS which was the worst part and in that time the endo pain was becoming unbearable. Holidays were spent in bed, I was having to take time off work, it was really affecting my quality of life. It has now been a year since my surgery and although that has been spent doing 3 IVF cycles (so I haven't really had a chance to get back to normal cycles), the endo pain has not returned. Obviously this is just my experience but I hope whatever you choose it works out for you, and if you have any questions about it, please just let me know. All the best of luck x
Thank you thats the kind of answers I need because if its helped your endo even with taking the ivf drugs then that means that surgery could be a good option for me. Thank you for sharing your experience. I went away a couple of weeks ago for 4 days and think I spent equivalent of a day and a half in the bathroom with my endo symptoms. I dint want to live like this. My MIL thinks that if I get pregnant my symptoms would go away and i'm not convinced they will so hey ho still don't know what i'm going to do lol
blows your mind lol xxx
I'm sorry you've not had more positive news. I don't have any experience with endo but I echo what the others have said and would probably have the surgery first to give your cycle/s the best chance.
I'm older than you but my amh levels were 15 and they managed to get 13 eggs. A lower amh isn't necessarily a hindrance so try not to get hung up on this, as hard as it is.
I very much doubt your husband would feel trapped by this diagnosis. He loves you for you.
Thank you for sharing your details it means a lot and gives me hope
We are steering towards the surgery but have still got a couple of weeks to decide before next appointment. We keep going back and forth with different pros and cons it’s pretty tough 🙈 xx
Good morning! Just wanted to tell you to not give up hope. I have adenomyosis...no endo that I knew of and I was 38 when I went through IVF, my reserves were low, but cant remember the reading. They only retrieved 5 eggs on collection after IVF round 2 and only 3 fertilised. We had two put back and one stuck and we now have a healthy 7 year old. I would deal with the endo and then go for IVF, however please ask for guidance from your consultant as to what he thinks the best route forward is, he will have seen this before, so trust him and his professional opinion.
Its funny I did ask my consultant his professional opinion and his reply was "its too hard to say" literally was keeping his place firmly on that fence!
Thank you for sharing thats goes me hope that even if we go ahead and they retrieve low egg numbers then we could still get pregnant. Thank you. so pleased you have a healthy 7 year old and that all is going well.
So for my adenomyosis, we had to fix that to enable my womb to allow implantation. I took zoladex for 3 months then straight into a fresh cycle. Slightly different as my solution wasn't surgery it was a hormonla fix. But I think it makes sense to prepare the womb for acceptance of the embryos, just my opinion obvs I'm not a doctor.
I'm so sorry for the news you received. I know how you feel, I pretty much had a similar experience about 2 years ago. I had diagnostic laparoscopy and they found a huge cyst in my left ovary, my ovaries were stuck to my uterus and also the pelvic wall, I had adhesions everywhere, and quite a lot of endo in my pouch of douglas and around my bowel too. I was diagnosed with stage 4/severe and referred to an endo centre for surgery.
My new consultant refused to even think about fertility until he'd done the surgery, because without it I didn't have much chance. I had my AMH done privately and it was 18. The consultant reassured me that they won't be doing anything that could affect my fertility. According to the NICE guidelines, they are not supposed to excise or laser cysts if the patient wants to conceive because that will destroy the ovarian tissue and therefore lower the ovarian reserve. So my cyst was only drained and the rest of the endo was excised. I'm now waiting to get my IVF started. I also get 2 free rounds. My AMH has gone down to 13, which could just be natural rather than the surgery. My fertility doctor said it's not great news but it's nothing worrying either - I still have a good chance of being successful in my IVF.
It is a really hard decision to make but you want the best chance for your body to conceive. Your surgeon should know not to remove anything that will affect your ovarian reserve.
Whatever decision you make, I really hope it works out for you X X
Oh Fatimah8451! im so sorry to hear you've had this same crappy decision to make.
it is pretty rubbish having to make this decision. The issue I have is that they have never done a lap themselves so he is just interpreting a letter from another consultant who was sh!t at explaining it to be honest. According to the details of this letter I have potentially stage 4 severe endo and honestly my pain always felt to bad to be mild anyway.
I am keeping everything crossed that whatever decision we make I can be positive enough that it will work.
It’s an awkward position to be in when all you really want is a baby!
I had a laparoscopy in May 2010 and was diagnosed/had endo lasered and a mirena coil fitted to slow the regrowth down.
Started TTC Feb 2013, but after 6 months of nothing happening, the same consultant suggested another laparoscopy where endo was lasered again.I was told that there’s a better chance of falling pregnant after surgery.
I was then given clomid for 6 rounds to try.
Got referred for IVF and was lucky to have 2 NHS rounds approved.
When we saw the IVF clinic consultant, I was then told my AMH level was low for my age and he said this isn’t surprising for endo/having had previous surgeries where it was on the ovaries.
2 NHS fresh rounds, 1 private fresh round and 1 frozen NHS round, resulted in two missed miscarriages.
After the second miscarriage, we had various blood tests which were fine and I had a hysteroscopy to check the uterus and all was ok.
I often think now, whilst we are considering using donor eggs, should I have another laparoscopy. Hubby isn’t keen, as he thinks about the waiting time and then the recovery time and i’m aware the years are passing by quickly.
Whichever way round you do it, don’t give yourself a hard time, otherwise you’ll drive yourself mental.
Look into getting a referral to a BSGE clinic for the endo removal, as they are specialists and if it is believed your bowel is affected then this should be the norm.
Having it cut out as opposed to lasered can take longer to recover from, but should help with longer term prevention.
If you do have a laparoscopy, I would ask them to do a hysteroscopy at the same time...
What a journey you have had I’m so sorry to hear about your miscarriages. You’re right nothing about this ever seems to be easy and sadly you go into TTC so naively, ok you know it may take some time but you never think you’re going to go through what you do, and they never tell you about how it affects you emotionally and the rollercoaster you travel.
Thank you for sharing your story/journey. Although you’re still going and still fighting it is inspiring.
I wish you so much love and luck you sound like you’re in the midst of a pretty big discussion/decision yourself.
We’re still battling back and forth with pros and cons and what to do. We will eventually come to a decision but what that will be I’m still not sure although we do seem to be heading more towards surgery x
Hi darling, did the doctors express any preference? It sounds like my situation three years ago. I have endo and low AMH. I’m now 34 years old. Doctors advised us to have surgery first and then IVF. Don’t give up, I’m now holding my little one in my arms 😘.
The dr literally sat on the fence and said it’s too hard to say as I did ask his professional opinion. If you don’t mind my asking were your pain and symptoms relieved after the surgery until you conceived? And how long was your wait after surgery to start ivf? 😍❤️😘 x
Pain definitely got better after surgery but not massively. They let us four months after surgery try naturally but didn’t conceive so we had IVF after. I know sometimes they decide to stop periods after surgery for a few months but that wasn’t the case with us. I think that’s something you need to ask because it will delay IVF.
Thanks for this I’m debating asking if they can give me something to help boost natural conception after surgery before going straight to ivf as it’s meant to be better chances after surgery, so it’s one of my questions.
They didn’t prescribe anything to us. I was only getting the well known vitamins for conception... but I guess every case is different. If you have any questions you can pm me. Good luck! Xx
So sorry you’ve had such difficult news to deal with. I’ve got endometriosis and I would say as scary as it might be, to have the surgery first. Get rid of as much of it as you can and it should improve the situation for IVF after. I wouldn’t get too hung up on AMH as it’s a guide to determine drug doses. Quality over quantity is more important and if there is endo left behind it might affect the quality of the eggs and your chances more than if you lose a bit of tissue during your surgery. Good luck with whatever choice you make though 🤞 If you go for the surgery make sure you take a good bit of time out after to recover properly, as it’s sometimes downplayed with a laparoscopy how much internal healing you have to do, when you have such tiny scars on the outside.
I also read somewhere else about recovery times so I’ll definitely bear that in mind. I’m trying to be positive and keep focussed quality over quantity. Finding things a bit of a challenge at the minute but I’ll get there. 😊💕xx
I'm so sorry you're going through all this. I don't have endo but I had a tube removed with an ectopic then a lap and dye which discovered that my other tube is completely blocked and all bent, so I would never be able to conceive naturally. I was then told my AMH was only 8.1. I was devastated at the time but ivf worked perfectly for us first time. If you've been given the advice to try ivf first then I'd go with that advice because it only takes one good quality egg. I read 'It Starts with the Egg' and followed lots of the dietary advice and avoided chemicals, nail polish, fake tan etc and I just focused on getting the best quality eggs I could. I only got 5 eggs but two made it to day 5, one worked implabted and the other frozen. If it doesn't work you'll still have another funded opportunity after the surgery. Good luck with whatever you decide xx
Thank you lovely for sharing. I’m so glad things worked out for you and I hope everything is going well.
We still keep batting things backwards and forwards one minute it’s surgery then it’s but we want a baby let’s do the ivf then we’re back to surgery again lol we just can’t quite get there yet. But we’ll keep talking
Im sorry to hear that you've had this difficult news to process. I have no advice unfortunately although I see you've had some positive stories above from other ladies. Your AMH really doesnt sound that by the sounds of things though. Wishing you all the best in your decision!xx
Really sorry to hear your news and the difficult decisions it has placed you in. My Endo wasn’t comparable to yours but I did have a large endometrioma cyst ON my ovary (not in) and also involving my small and large bowel. I had the lap surgery before having IVF treatment which is ongoing now. I had the lap on he NHS but initially paid private to see a consultant who I had researched who was experienced and offered excision surgery. The previous Gynae didn’t fill me with trust and seemed a bit too keen on removing an ovary if the op proved ‘tricky’. Totally happy with my decision as the fab Gynae I went with removed the cyst whilst preserving as much ovarian tissue as possible. In fact, that ovary is the more active of the two as I have found through IVF treatment. Everyone is different but just thought I would share and I hope you are ok. It’s a tough decision to make. I know how anxious I was as to whether the operation may reduce what I had to offer IVF wise. The IVF hasn’t been easy and the first round was s*** with nothing to transfer, but since then we have had improved results with five embryos... so there are positives to find. Wishing you the best of luck xx
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