Lindle

Is your care all being controlled in a BSGE specialist centre as required?

Ejl2688 in reply to Lindle

I’m not sure, I had my appointment with the specialist at Chase Farm Hospital. But thinking of going private with the same consultant. How do I find out if it’s a BSGE?

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roshsp2012 in reply to Ejl2688

Chase farm hospital is part of Royal free, there are three endometriosis specialists (they are a bsge centre) there so just check their website to make sure your consultant is one of those three consultants.

This is the link to check its bsge status and whether your consultant is part of it:

bsge.org.uk/centre/

Hope it all works out well whatever you decide

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Ejl2688 in reply to roshsp2012

That’s great, thank you so much for your help! I’m going to check whether the consultant I’m seeing is one of the three. X

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Katie98

I'm really sorry to jump on your post but I was just wondering how the endometrioma, cysts and bowel endo was found? I have a few scans coming up and I'm hoping they could see bowel endo perhaps via the internal scan before surgery is required. I've had cysts removed and thankfully they didn't need to remove my ovary but I wonder if it would have been better long term given all the issues years later. I wish you the best of luck. Thank you for your help x

Ejl2688 in reply to Katie98

I have various scans like MRI, transvaginal, ultrasound etc, although they have not confirmed I will definitely need part of my bowel removed due to endo know I have bowel endo Because last time when I had laparoscopy they found it on my pouch of Douglas, and I have really bad bowel movement pains, blood in my stools (sorry tmi) and they confirmed that my bowel is stuck to my ovaries and womb so I know for sure. I think the only way to confirm endo is through a laparoscopy, so you would need to have it for them to see what’s going on inside. They said they can see my cyst Cos it’s so large and it showed up on the MRI scan. Hope you get answers too. It’s so hard to be positive atm waiting on a date for surgery and surgery details. X

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Boxclever1

Bless you. I have no direct experience (completed my family before I got my endometriomas) but there is a great deal of scientific literature out there about the exact dilemma you are facing so in your shoes I would research-research-research (if for no other reason to come up with the right questions to ask your consultants!). This is a good start: ncbi.nlm.nih.gov/pmc/articl...

It might all come down to timing/priorities. For example, if having a baby now is THE most important thing in the world to you, then just draining each endometrioma and going immediately into ivf (covid permitting - are clinics open?) might be the best option. Draining should be least damaging to the ovary so give you the most eggs (some to use, some to freeze). Hopefully, the 9 months of pregnancy isn't long enough for your endometrioma to grow back too big (I believe the pregnancy hormones are anyway protective - which is why the OCP is used to prevent endometrioma recurrence after surgery), you have your baby and then deal afresh with all your long-term endometriosis problems after that.

Of course, all this is gambling on the iVF working quickly; if you need years of IVF, or end up resorting to donor eggs, then you'll wish you took a more aggressive approach to the endometrioma removal to ensure it doesn't grow back ... Is there any male factor infertility that could affect the success of IVF? I'd want to know that before making my decision.

Good luck and best wishes xx

Ejl2688 in reply to Boxclever1

That’s really helpful, thank you for your advise. I do agree that I think having a baby is my priority atm, I’m 32 now and think if I leave it any longer, the chances of me having a baby will be slimmer and slimmer. I think I will suggest that to the consultant and see what he thinks. Maybe going private will speed up the process a little, I do hope to have the surgery done by next year and also start first round of IVF next year. Like you say it might take a while even on IVF, so I rather start it asap. X

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MaryMichaels

Hi Ejl2688. I’ve been in a very similar situation to you. I had a 12cm cyst on one ovary and the consultant warned me that not only may removing it do damage to the ovary but that the cyst may have already damaged it beyond repair. He was a fertility specialist so I think that made saving the ovary a priority for him, whereas at the time I didn’t really think about it, I was panicked about the large cyst.

However, he cut it out and then did follow up scans to check it was still functioning and it is. However... (so many of those!) 2 years later and I now have 3 endometriomas, all small (4cm and under) across the 2 ovaries. The consultant I’m seeing now is a BSGE specialist (ie endometriosis specialist - there’s a website where you can look up accredited ones) and they’ve found damage to one Fallopian tube and warned me not only may that have to be removed but risk of ovaries too.

I would just say - they have to warn you about all the risks but... especially if you’re going private - fertility is clearly very important to you so find a specialist who will do whatever they can to salvage the the ovaries. I know this may seem daft but some surgeons take it for granted like “oh it’s not worth it, there’s damage, likelihood is slim it’ll recover” well actually, the human body is amazing and capable of recovering from all sorts of trauma and as having children is important to you that should be prioritised. I’ve said, and I hoped they’ve listened, that I do not consent to a hysterectomy - not only because I want to have children one day but because of the health implications. It’s your body, it’s your life, don’t take what the doctors say for gospel and don’t feel like you can’t make it clear where you stand on the likes of ovary removal - wanting children, not wanting to go into early menopause - they are all valid concerns that should be heard. Wish you the best of luck and hope surgery goes well.

Ejl2688 in reply to MaryMichaels

Thank you for the advise, really helped. Sorry to hear your cysts came back after a few years but yes that’s what the consultant say aswell, that they do come back and there’s not much we can do about it. Did you take any contraception the last few years to stop it coming back fast/ delay it as much as poss? What are you doing now to manage it? Do you have another surgery planned? X

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MaryMichaels in reply to Ejl2688

Yes its disheartening but as you say it’s unfortunately common with endometriosis. I was on Provera after surgery when new cysts started growing. Previously I was on GnRH injections but had to stop after 9 months - they worked really well.

After the Provera was ineffective I tried bioidentical hormone treatment (a progesterone cream and some supplements) they worked well for about 6 months and then the cysts started growing again. Then I went back on the combined pill, marvelon this time. I had to stop initially because I tried so many different ones and had bad side effects. This time on marvelon I had an awful feeling of being generally unwell for about 4 months so then moved on to Eloine and had to come off that last week because of headaches! So now I’m on nothing but likely going back on GnRH injections before surgery - which my consultant has referred me for and this time to involve a colorectal specialist because they’ve found an endometrioma nodule on my bowels. I’ve always had terrible bowel symptoms with endo but this is the first time scans have properly checked my bowels. I’ve always struggled to find a successful treatment plan to manage my symptoms in between surgeries now. That’s my biggest stress about having surgery again, it’s only been 2 years between these two (6 between the 2 before) - I do not want to be having surgery every few years. What about you? Have you found anything that successfully helps stop growth?

There’s always so much to process with this condition, i learn something new every time I have an appointment or see a different doctor! I hope things get clearer for you and you become more comfortable with the treatment options? Xx

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Ejl2688 in reply to MaryMichaels

Wow, how many laps have you had? I’ve only had one 3 years ago which was used to diagnosed my endo, and they removed some endo from my pouch of Douglas, and said my endo was more severe than they thought so they can’t do much unless I have a bigger surgery. They put me on the mini pill after And told me to have a baby asap if I want one, however we wanted to try for a baby after getting married so I was on the pill for about 8 months but stopped after Cos it was making me insane. I then got married and we been trying for a baby Since go no success. So thought we go for IVF but obv doctors sent me for tests first (even knowing I have endo) and they found this massive endometrioma on my ovary...which brings me to now. My pains have been very good to me the last 3 years, only flaring up really badly like 2-3 times in a year where I’m actually in so much pain i would be close to calling the ambulance. I’ve gone off milk for 2 years and lower sugar levels, that have seem to helped. I’m also taking vitamins like fish oil and pregnacare which seem to help too. I really don’t want to be having surgeries every few years, hence why even this time when the doctor said I will need it, Im very reluctant and was quite upset knowing that I have to go for it. I have been searching on how to stop my cyst from growing too, but haven’t found any useful info. What about you? I feel like now/waiting for my surgery my cyst is growing each day. I’m scared it will be even bigger by the time I do have my surgery. X

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MaryMichaels in reply to Ejl2688

Gosh that all sounds so stressful. The thought of having surgery again and again is really hard to take. This would be my third if I go ahead, but like you I’m not keen to keep putting my body through that - especially when it just seems to keep coming back. They’ve told me this would be a more comprehensive surgery to remove as much endo as possible but have said “of course there’s always the risk it’ll come back”... I don’t think it’s fair to expect women to keep going through this again and again. I’ve seen maybe 4-5 different gynaecologists and none have the knowledge or patience to work on finding treatment to manage symptoms long term.

The only treatment that’s really stopped the cysts from growing is GnRH injections. I had Decapeptyl but you’ll find gynaecologists really recommending zoladex - not sure why, must be a pharmaceutical endorsement or something. Decapeptyl is a 3 month one - luckily for me it sat quite well, so ideal only having an injection every 3 months. The risk is if it doesn’t agree with you you have to wait a while for it to wear off. GnRH injections shut down your ovaries completely, basically mimicking menopause so you also may get all those fun side effects! But it gave me good respite from bad periods and stopped the cysts from growing. The doctors have advised it again as nothing else seems to be working and also it helps “prep” your body for surgery as there’s less blood and whatever else in the womb area apparently. Another thing to note it’s really not recommended you stay on them for longer than 6-9 months - because it can have lasting effects on bone density etc. I’ve been on them for up to 12 months before with HRT (which didn’t agree with me) and then a second time for 6 months.

I wonder if you’d be up for trying that temporarily? My periods have come back as normal both times after having the injections so hopefully it wouldn’t affect your fertility but obviously gynae better to advise. I really hope you manage to find treatment that works and they go ahead with the IVF x

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Ejl2688 in reply to MaryMichaels

Thanks for your reply dear, I will have a look at the injections if my gynae don’t give me better alternatives. I do want to try for a baby asap so not sure if the injections will be good for me, it’s a matter of whether I want pain and have baby, or no pain (hopefully) but no baby. It’s really disheartening to know someone I want so much might not be able to happen. I’ve not got an appointment to see another specialist (through private insurance) for a second opinion, hoping this won’t take as long to get the ball rolling. Xx

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MaryMichaels in reply to Ejl2688

Don’t give up hope, once you get the right advice and treatment you’ll know because you’ll feel comfortable and confident with what they advise. Let them know what’s most important to you, they can find a way to improve your fertility and minimise the endo risks/impact then dealing with endometriosis pain long term can be the next stage. Wish you all the best and hope your second opinion gives you the answers and clarity you need xx

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Lindle

The guidelines that apply to treatment of endometriomas prior to IVF is covered at ESHRE 4.3.2

eshre.eu/Guidelines-and-Leg...

Ejl2688 in reply to Lindle

Thank you dear, I’m going to have a read on the guideline. X

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Eleanorbargates

I had a 10cm cyst which was growing on my right ovary. Due to covid my operation was pushed back 3 months and in total I had to wait 8 months until my surgery and by then it had grown to 20cm!! I looked 6 months pregnant. I had mine removed but they left a bit on the ovary as I also haven’t had kids yet and wanted to keep my ovaries. It’s been 5 months since surgery and my right side is starting to hurt again. This could mean the cyst is coming back. If you are trying for kids I would keep ovary and try and get pregnant ASAP. I’ve been told I’ve got a year window before the cyst is likely to come back.... so trying to get pregnant is on the priority list for me. I wish you the best of luck with it all. It’s painful and horrible but keep up hope xx

Ejl2688 in reply to Eleanorbargates

Wow 8 months! That’s ridiculous, did the doctor not say it was urgent surgery? I can’t believe it can grow so quickly, I think I had my scan 2 months ago, and it was 10cm, on my appointment on Wednesday the doctor said it’s now 11cm. I really hope I don’t have to wait that long, we asked the doctor how long of a wait it would be (he said I’ve been put on urgent surgery list) and if it will be like waiting for a year, he said no but can’t even give us an estimate. I feel like every day my cyst is growing and the longer I want, the bigger it will be. I look about 4 months preg right now. I agree with trying to get preg asap after surgery, not sure how long IVF will take after surgery, that’s not including the waiting time, and the actual process. Thanks for your support, yes let’s keep up hope. X

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