I've been referred to fertility again now referrals in my area have reopened! Little win.
I suffer with endometriosis, diagnosed by a laparoscopy Apr 2019. Been TTC since Sept 2019. After an ectopic pregnancy in May 2020, I was told I had a large cyst on my right ovary (not related to the pregnancy) from the ultrasound I had. I have also been having irregular bleeding since my endo operation, and from OPK testing since Feb, I haven't really peaked at ovulation at any given time. I am also having some pains in my bladder and trouble urinating at the moment. I think I have PCOS, as I have every one of the symptoms but this has never been diagnosed.
I think my GP didn't know whether to refer me to an endo specialist again or to fertility, but for me I can learn to live with the endo for the time being while I try get pregnant as that is what I want right now. My partner's sperm analysis was absolutely fine and all my bloods taken were fine at the time.
So my questions are: does anyone with a diagnosis of endometriosis pre fertility referral have any stories, advice etc on how they MIGHT approach my fertility treatment? Or how yours went? What sort of treatment am I likely to expect to receive? Will I be given drugs to make me ovulate, or will they remove this cyst on my ovary and endo with another laparoscopy?
Really interested to hear your experiences.
Thanks,
Meg xo
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Hi, I don't have endo (as far as I know so far), but just wanted to reply. I do have PCOS and issues with cysts, I don't typically have regular periods or ovulation.
As far as I know they may do a laparoscopy and / or hysteroscopy before proceeding, they may also want to drain the cyst at the same time (do you know what type it is?), they may then offer you rounds of Clomid to help you ovulate (I did several rounds of this) and they may also do a HSG or similar to see if your fallopian tubes are functional or blocked first also. It may depend on the consultant / the standard protocols in your area. They may give you a choice if you want to do ovulation induction with Clomid or be put down for IVF depending on the results of all the tests. Best of luck xx
Thank you for the info that's really helpful. I'm not sure about the cyst. I just have notes saying a large cyst was found however due to the ectopic pregnancy at the time it wasn't investigated further. I've got a US end of this month for them to have a look at it properly.
How did you find Clomid? I've heard of it before. I'm concerned also that this will all interfere with work. I only work in an office Monday to Friday, but how did it affect you if you work?
I didn't realise they'd jump to a laparoscopy so quickly but I do think it's the only way my endo has been controlled so far.
Thank you for your advice though. If you don't mind, where are you at regarding fertility?
Clomid was fine (almost no side effects), they tried 50mg first, but I didn't ovulate and then 100mg I ovulated every time for about 5 cycles. My doctor was a real pain wanting me to go in for scans all the time (roughly 4 scans over a 2 week period each cycle), but I've heard of some people who got given it and never had to do any monitoring so it might depend? Hopefully they can be flexible with your work schedule.
I did 5 or 6 cycles of Clomid with no BFP (most with trigger shots), then 2 cycles of Letrozole for ovulation induction, no BFP's again. I'm now on my 2nd full IVF fresh cycle after 2 failed IVF transfers. Still waiting for my miracle xxx
I really hope you get good news soon! Hopefully work will be okay with any monitoring required - they were very understanding earlier this year when I was in hospital and getting treatment for the ectopic pregnancy.
It all sounds very long and drawn out. I can't even believe it's got to this really. But I suppose everyone feels that way 💔.
Thank you lovely. Totally understandable to feel that way, it's a very difficult journey and it can feel really unfair, but there is always hope! Best of luck to you too xxx
In my case I have endometriosis, polyp, fibroids and endo ovarian cysts and also low egg count.
I’m in the beginning of my fertility journey, but so far the fertility specialist has suggested my GP to refer me to a hysteroscopy & polyp removal and endocrine specialist. I’ve been seeing an endo specialist who suggested laparoscopy but my fertility doctor would prefer to collect the eggs for IVF before any intervention to ovarian cysts.
I haven’t been very lucky with OPK, taking temperature, egg white fluid or cervical check. So I’m not sure when nd if I’m ovulating.
I do have an appointment with my fertility doctor on Friday. I can always share what has been decided.
I'm sorry to hear about your troubles. I'm not sure about any other diagnosis for myself, I feel things have slightly been brushed over when I was last seen by my endo specialist. After I said I wanted to begin trying to conceive, he took out my coil and discharged me back to my GP. I feel like I've been abandoned almost and I'm now in a tugging war between referrals for fertility and endo?! Did you feel like that and is there some collaboration throughout the process?
My OPKs are just high, then low, then high and low again. No real peak is showing from the app I'm using. I've just started yesterday recording BBT but I'm not holding out for that either. I'm going to stick with it in hope I can take this info to the first appointment to show the doc what the craic is!
I would love if you can share - feel free to private message if you want. I'm just interested in how it goes for endometriosis sufferers!
Heya...yeah there isn’t much communication between the endo and fertility teams. Even tho I’m seeing both in the same hospital I have to tell them what the other one said. Yes last year when I asked about the effects of the surgery to my egg count the endo special sent me back to my GP and he was pretty rude.
Your OPK sound like PCOS. Mine are overall low.
I’m not sure how I feel. I feel like they don’t explain much, and there’s not much support or anything. The endo team focus mostly on symptoms of pain, so conceive is my priority and I don’t mind waiting for surgery after pregnancy. The endo specialist view is that the endo will decrease the chances of pregnancy and IVF. The fertility doctor wants minimal surgery for better egg count. So yeah...no collaboration at all.
Just got my appointment today. In my case the fertility specialist said is best to have the lap to improve ma chances because my ovaries and tubes are glued behind the uterus. So far it’ll be having lap in 2 weeks and after a month have scans and check how’s everything for fertility.
Hey - this is all good news right! That seems like such a fast turn around for you. I'm so glad! I can definitely see why in your case the lap seems the best option. I hope it goes really well for you and they can get everything unstuck.
I'm still using these damn OPKs and still no peak detected. I've even been recording my BBT and that's useless too! I'm trying to give everything a chance but this is bloody ridiculous now haha.
I got a letter to refer myself to a choice of hospitals. They said if I don't get a call about an appointment by 26th, I can call myself to make one. I hope I have the turnaround of treatment sooner rather than later though.
Yes for me I see why it’s the best option. I’ve been taking protease enzymes to help the body shrink cysts and eat up the scar tissue but still I can’t see the ovaries moving back to their natural place.
But for endometriosis cysts there are positive studies on taking NAC, you can always I’ve it a go and see if it helps. And the same for enzymes that can help with cysts, etc.
For PCOS a lot of ppl say ketogenic diet is amazing, too. Just ideas.
My endo was diagnosed after starting fertility treatment but had been suspected for a while and like you I had already seen an endo specialist. I found the endo specialist and my fertility consultant worked really well together so one would email the other etc and they were able to get me a laparoscopy within a few weeks etc and then the fertility team took over my treatment I would just ask them direct how it will work. Best of luck! X
I'm glad that you've found they have worked together well. I'm concerned that as I'm already diagnosed and received both an op and treatment (I went private too!) that I'm going to run into some troubles. When I had the ectopic pregnancy, the early pregnancy unit didn't even have a scrap of a note about my laparoscopy the year before which concerned me greatly!
Hopefully they re-refer me to a more local NHS endo specialist who works with fertility. We shall see!
So you say you got the lap pretty quick - that's great news! I definitely feel like another is necessary for me especially with this cyst and also just investigative too as non of my endo has ever shown up on a scan before. So hopefully they'll whiz me through that fairly quick.
What are the next steps for your fertility treatment if you don't mind me asking?
All my treatment has been with NHS and at the same hospital which I think helped i also was lucky that my GP referral was picked up by the gynae from BSGE centre We then started IVF then they found fluid and a blockage etc caused by the endo. IVF was postponed and I then had laparoscopy and salpingectomy and had four months of down regulation injections (prostrap) before starting the IVF again. We were very lucky and were successful, our little girl is 8 weeks old today 😊
I wish you all the best, I would definitely make sure to get your notes and even get copies yourself and add them to your file.
Great that the teams worked together. Where I’m being seen they don’t communicate much. And even last year when I saw a different Endo specialist who also was in the fertility team, he didn’t answer my fertility questions and sent me back to my GP to ask for a fertility referral and such.
You’re right it is best to get all our tests, etc. In case you’re seen at a different place, so they can check your medical history.
I was diagnosed with endometriosis after starting fertility treatment to freeze eggs. When you had your endometriosis laparoscopy did they do a tubal latency test (dye passed through your Fallopian tubes) to check they were open so if you were ovulating there is a chance for you to get pregnant?
I believe this and the hysteroscopy and blood tests to check ovulation would be a starting point. Depending on age I think they generally would try to get ovulation first and trying naturally, potentially with timed ovulation (blood tests to track and then advise when best to have sex). Then on to IVF.
When doing an IVF cycle I think they often like to do an agonist/long down regulation cycle to help reduce any flare of endometriosis. Do you know if you have adenomyosis as well? If so, sometimes they like to put you on zoladex before transferring an embryo to make the womb more hospitable so may be worth asking those questions in your initial consult.
They didn't do the dye test, no, as I wasn't trying to conceive at that point.
I really hope that we don't get to IVF, but I haven't ever been told I have adenomyosis. But I feel like my whole diagnosis for endo was sort of brushed over. Have a lap, get told that's what it is, received some treatment and get abandoned and referred back to the GP haha. I did have Zoladex for a while and I hated how it made me feel, so I would fight tooth and nail not to have that ever again - only if it's the only way!
I'm constructing a big list of questions now anyway thanks to the responses here.
Hey so I was diagnosed with endometriosis during ivf treatment, initially we were sent for fertility treatment due to partners very low sperm count etc , so it was news to me when this was found. It was actually during my baseline scan after 2 weeks of the down reg injections that they found a large cyst looking thing around my uterus ( they then cancelled that cycle & I was referred back to my gp for this to be diagnosed & treated , it turned out to be an endometrioma 10cm which was only diagnosed during the laparoscopy surgery to drain it. I was told thenI had endo in both ovaries , never really had any major symptoms or issues with periods )
After all sorted I was sent back to ivf clinic to carry on with another cycle , but at my first scan the endometrioma had returned in the same place , not as big , but only 6 weeks after surgery , this is common with cysts like these to reappear, so now they have decided that they will attempt ivf but collect eggs from just one ovary , it can take so long to be seen & have laparoscopic surgery ( in my case it took a year as our hospitals are in different nhs health boards & now with covid waiting lists will be much longer so if I was you I would chat with your fertility doctor to see if they can go ahead with ivf treatment if the cyst isn’t too large , they gave me prostap injections for 4 months to try to reduce & stop the endometrioma from growing further , which I think had helped slightly . I am currently awaiting 2nd cycle to begin x
Yeah, it can be long waits for laparoscopy, I ended up going private for mine just because of the agony I was in. They have always said I still have cysts surrounding my right ovary which they only cut away 18 months ago; so to have a large one plus others only this far along is really concerning I'm finding! I am thinking they will want me to have another lap surgery before any more fertility treatment. It's so hard battling two completely separate, but all together similar issues!
I really hope your cycle goes well next! I'm hoping we don't end up getting to the IVF stage and they can just tidy up by an op and maybe some timed ovulation. But that's just wishful thinking - nobody wants to be doing IVF at the end of the day. All the best and thank you for your response. X
Thankyou ! Ahh yes it maybe actually beneficial for you to have another lap surgery as you may not need to get to the actual ivf stage of treatment 🤞it’s such a complex issue when cysts are involved isn’t it , hopefully the wait won’t be too long for you.
If they can give you help with ovulation like you mentioned that may do the trick hopefully you can get some answers soon about your next steps of treatment, it’s very much like that difficult health issues to deal with that interfere with fertility but have to be treated separately. I wish you all the best with everything x
I have severe endometriosis and got diagnosed about a month before you through laparoscopy. One of my tubes is basically redundant but the other leaks? I had deep infiltrated endo so lots of tissue and it’s on my bowel, I had cysts in both ovaries and they were kissing ovaries and had stuck together.
They told me after lap that they didn’t do anything as it could have hindered my chances of getting pregnant. So I got a private appointment with an expert near me, went on the pill for some relief as I’d been told to wait another 6 months for an appointment with an endo consultant and I didn’t want to wait. The private consultant sent my referral into Liverpool Women’s and recommended I have IVF before any operation. I did my first round in Feb 2020, but I had a massive bleed and ended up in hospital just before egg collection. Thankfully, I was given blood transfusions and they let me out to do the egg collection! Then I was too poorly for a fresh transfer and then COVID hit!!! So now I’m 10dpt 5dt FET which I started end of August. That’s where I’m up to at the moment.
I didn’t know whether to have an operation to clear it all up, but the doctors recommended getting my eggs before that, then if this doesn’t work perhaps going to get cleared. I’m still wary of another operation though. I have 2 more embryos. My cysts seem to shrink then grow and shrink!! When I had my last scan, my ovaries have separated but one is very high and the other has a cyst again.
Wishing you all the best, if you’ve any questions ask away!!!
I'm a bit concerned about this whole 'not having a laparoscopy before egg retrieval' advice I'm getting as never before my laparoscopy was it asked if I would be trying for a baby soon or in the near future! My endo is on my bowel too and it's crept into my bladder now. Your process sounds very direct - sorry if I missed something here - but did you go from diagnosis of the endo straight to IVF? Did they not try anything in between that? If they didn't, why was this? If they did, what was this?
I hope the rest of your IVF journey goes well and hopefully unaffected by Covid!
Thank you, we managed to do it all although it took roughly 15 months due to COVID. Unfortunately it didn’t work for me this time, but we still have 2 embroyos. Back when I had my lap, they told me that they came out of the laparoscopy because the damage was quite severe and if they’d have cleared it, it might have damaged my fertility chances further. So they told me that to try ivf first, to get my eggs collected etc. I just fast tracked it by going private to speed up the process. They told me to go back on the pill as well until I started ivf. Hope that’s been helpful ☺️ xxx
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Next steps on fertility journey, platelet rich plasma (PRP) maybe?
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Sunshine after the rain. Brilliant appointment with our fertility doctor 😊
