I'm new here, 34 yrs old. My husband and I have been TTC for 2 years with no luck. We've just been referred to IVF via the NHS and are lucky enough to get 2 rounds for free. Last week I had a ultrasound and was diagnosed with 2 endometriomas one on each ovary, I've been told they are small <3 cms each.
I suspected that I might have endo for a while, when i turned 31 my periods started changing, I get dark brown stringy spotting for 4-5 days before full red flow starts, painful periods, pain located in lower back and stabbing pains up my bottom!
I wanted to ask you all what your thoughts were on whether I should go in for the IVF first, or have a laprascopy done before hand? My concern is if I don't have a laprascopy in advance we could potentially waste our 2 free cycles due to my endo messing it up somehow. But, on the flipside I'm concerned that if I do have the surgery it could potentially reduce my AMH level even more, it's currently 8 pmol which is in the low fertility bracket.
Any thoughts or advice on people that are in, or have been in a similar situation would be really appreciated.
Thanks for reading!
Tara
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Red1981
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If you get a lap first could it possibly make it easier for you to conceive naturally? maybe do an exploratory and just see what's going on in there. If it's been two years is def get a lap first before ivf.
I feel your pain, 5 years ago my fertility dr told me I didn't have endometriosis & my pain was normal. She referred me for ivf & they were lovely but after a scan they told me I had severe endometriosis & a large endometrioma on my ovary. They refused to do the ivf until I had it removed as they said it was dangerous. I'm not sure if this is the case for you as yours are small but it's something to be aware of. Why don't you get there advice as they wouldn't do the ivf unless it's safe. What I can say as a positive, I was soooo lucky & fell pregnant whilst waiting for surgery. My endometrioma shrunk whilst I was pregnant & was then removed during my c-section as I had complications & the registration on call was keen. Endo shouldn't affect the ivf as I've been advised it for number 2 (sadly can't afford it).
Hi, I'm keen to hear what you decide or are told. I'm interested in the other replies too. We have been ttc for two years and I'm 34 as well. I have a lap 18 months ago that removed an endometrioma. It returned and was 5cm within a few months. Not sure what size it is now! I'm only now thinking that I should get another referral to a specialist as we are looking into IVF. I did some reading last night about the risks but it was inconclusive really. They did say though that when the endometrioma is under 3cm the success rates are better.
I think the IVF or endo specialist should advise better as they'll tell you what will improve your chances. There are other posts on here about people going onto that injection to dry up endo before IVF. There appears to be many options good luck x
Hi brottonbabe sorry for my slow reply I've just seen your response now. I spoke with my gp and she wants me to see a endo specialist snd have the laprascopic surgery first before having the ivf. She's referring me to James English im hove I'm lucky and can use my work private insurance so will hopefully organise that initial consultation with him soon and will then go in for the surgery. I'm nervous but To me it makes sense to check the oven out thoroughly before attempting to put anything to bake in there! I actually posted a question to Prof Robert Winston via his genesis research website and his response was to def go for the surgery and also an mri due to my other symptoms. I'm hoping that we won't lose our nhs referral as by the time I've had the surgery it will be approaching April and I know that's when they review the budget! My gp won't refer me until after the surgery as she says at the moment there's only a week or so after referral to first appointment at the fertility clinic for ivf for us this would be the agora in hove as we're based in Sussex. I imagine all going well I'll be going for surgery sometime in early April then I guess first ivf will be June ish. I'm already worrying about that in the sense that as it's an nhs fertility clinic will they use a one size fits all approach with the protocol they put me on, which in turn might lower my AMH even more! I don't know how you've felt but I feel the nhs handles this so terribly it's taken 2 years to get to this point and I've very much had to manage it myself, my GP even said "what do you think is best, surgery or straight in to ivf" and I thought to myself we've wasted 6 weeks being referred to you by my normal GP as you are a supposing fertility expert! She also didn't know about the guidelines for funding first off it was AMH lower than 4.9 the when I spoke to her on Friday she's upped it to 5.4! Interestingly enough there is nothing on the CCG website on AMH levels! I've applied via the freedom of information act to get the latest copy of information so I know exactly where we stand! I'm also preparing myself to do ALOT of research before going on the nhs ivf cycle so I'm put on a protocol suitable for my condition!
Hi, thanks for your thorough reply I totally agree. I was advised not to take the cyst out again when it came back and none of my endo was touched so I've waited 18 months and now we are looking into IVF I'll need a re referral to get the blooming cyst taken out again! Grrrr. I'm 34 and have been given very poor information. I got a choice of two hospitals (one of which was a specialist centre but I didn't know so I chose the other). We are moving house soon and are going to look into adoption then. A family is a family and we have so much to give....
Good luck with the op and then the IVF, please keep me updated x
I'm sorry you've had a rough time with the NHS as well, its really got me fired up! I feel like you have to manage yourself, there's no guidance you have to effectively do as much research as you can then tell them what you want done! It's crazy! I was told this time las tyear my amh level of 9.6 was normal and reassuring for my age and that my cyst was too small to cause any issues and keep trying naturally... so we did effectively wasting another year. My nhs gp that we were refered to by my usual gp because she also had no clue what we were entitled to (not certain this one does either!) went completly OTT on my AMH result, "oh that's really not a great result, you might need to use donor eggs" blah blah blah. I wanted to reach down the phone and shake her. THERE IS NO TEST OUT THERE THAT TELLS YOU WHAT YOUR EGG QUALITY IS, OR...how I'll respond during IVF just gives you a guideline on the drug protocol..you utter baffoon! Oh and did I fail to mention my FSH levels of 6.2! So don't f'ing tell me that my result is low! Yes it's low for EGG QUANTITY, it takes ONE good egg! I couldnt give a monkeys if i go through the menopause slightly later than usual or my values arent so great for my age but dont put the fear of god into me at the age of 34 for goodness sake! Sorry rant over! I'm just so unbelievably hacked off with it all! If IVF doesn't work with my eggs we are goign to give donor egg a go then move onto adoption, you are absolutely right a family is a family. Keep me updated in your journey too! xx
Hi, I suggest you have a laproscopy first. Because even if you will get pregnant, you may miscarry easily if you have endometriosis inside you. That happened to me. After my misscariage I had a long excistion laproscopy and then I was told to get pregnant naturally within one year. If that wouldnt work, the doctor suggested to go for IVF.
Luckily I become pregnant 11 month after the lap.
Please make sure you also checking hubbies sperm, because sometimes it is also a reason why you can not concieve. But woman with endometriosis always think that that is their fault. Sometimes you need to do IVF also because of husbands problems.
I had IVF to have my little boy, my clinic wouldn't proceed with anything that was impacting the ovaries so would require surgery first. I'd always say do everything you can to make sure your chances are as high as possible with no what ifs if IVF doesn't work the first time. Good luck x
Hello, this sounds like my situation. I was about to be referred for Ivf but at my pre Ivf scan they found endo and cysts. I had to wait 6 months for the op and when I finally went back to the fertility nurse my FSH levels had gone higher which meant we were no longer eligible for NHS Ivf. We were gutted. When we went to the private clinic, they found that my AMH was low (probably made lower through the lap) which meant my egg collection levels were low. This is something they don't tell you before surgery. It's a frustrating situation and one you don't know what to do for the best but my advice is to act quickly as laps take a while to come through. If the op takes any longer than a few months, it might be worth seeing how much it is to have it privately so you can crack on with Ivf ASAP. If if have known that waiting too long would impact my FSH and then having the op would impact my AMH, I would have had it all done quicker through a private hospital. After everything we went through (and not having many eggs after treatment) I'm currently sat here feeding my 9 week old twin girls so even though it is tough, it can and I'm sure will work for you too. Good luck xx
We had our first ivf attempt with no lap, I got pregnant but a week later it was gone.
Long story but for various reasons I had a lap after this attempt, cysts and endo were removed and on my second attempt three months post lap, with the endometrial scratch I got pregnant with our daughter.
I was lucky to be given 3 IVF cycles. The IVF gynea suspected that I had Endo from my symptoms that I told her but said that it wouldn't impact on IVF if I did have it. I decided after the 1st round, if it failed I would ask to be referred for a lap, which I did to a general gynae at my local hospital. He said he found Endo on my bladder and removed it. I then went onto to have my other 2 IVF cycles which failed and it was Nov 2012 our last attempt at IVF.
Since then I've been suffering so badly (well always have done, but it's gradually got worse and worse) and since reading up on here and clueing myself up I asked my GP for a referral to a BSGE centre. I've just had a diagnostic lap under them and they have found endo everywhere plus suspected adenomyosis as my uterus is bulky. He told me that my left ovary was twisted and fused to my bowel and uterus and lots of adhesions.
Throughout all my IVF cycles nobody ever suspected anything wrong with my ovaries or womb, in fact I was always led to believe that they 'looked lovely' and I'm now left thinking if only I'd been thoroughly checked out before wasting my IVF cycles.
I'm currently waiting for a further operation to remove all the endo plus a bowel resection as the Endo is infiltrating my bowel
I don't want to advise you one way or the other, just wanted to let you have my story.
Thanks for all your replies, my minds made up I'm going to push for the laprascopic surgery before going in for the cycles. Fortunately the clinic we'll be referred to has links with James English who's a member of BSGE.
Hi, I would recommend lap because it can help you to conceive by clearing any blockages. If I hadn't had my lap I wouldn't have known that my left side wasn't working properly and IVF would have been pointless. My endo hasn't grown back since my lap in October, I'm on a course of prostap injections which stop periods completely and I start IVF in March so fingers crossed it will work xx
Thank you all so much for your replies, all really helpful. Lindle, I'll absolutely look into those guidelines. My gp has referred me to a endometriosis specialist and fortunetly I can hopefully see them quickly thanks to private health insurance throgh work. I'm going to have the surgery and then go in for the IVF. We're being referred to the Agora after the surgery.
I wanted to ask one final question - do any of you know what IVF protocol is best for women with endometriosis and low amh? Drugs, lengths etc? My concern is because its NHS cycles, they'll use a one size fits all approach with me which won't be as sucessful as other approach and could lower my AMH even more.
Hi! I have just posted a similar question! Looking forward to reading the answers to yours and sorry to barge in. My problem is that my biggest cyst is 7cm so I might end losing an ovary. Therefore I am considering whether to try to at least extract some eggs before the laprascopy.
I only got my news 2 days ago and have been frantically reading on the internet since. It sounds like you can carry a baby in your situation i.e. with smaller cysts.
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good luck x
Endometriosis discovered during IVF treatment?
Insides complete mess! Ivf to be or not to be? Advice very welcome!
Looking for answers...!!
Just a quick question, is it possible to have endo but a laprascopy shows nothing?
