Hey. This is the first time I have shared my situation but after yesterday's announcements I just called admissions and was told my op which is on urgent list is cancelled indefinitely due to covid. In September I was told I have an endometrioma which is 11cm and stage 4 endo. I am 36 and this is stopping me from conceiving or even trying to until I have had surgery to remove it out of my ovary (they have said I may loose this ovary too) I have been told I may even have to have my tubes removed. My ovarian reserve is low and this news, I gota say is devastating. I'm not sure what to do anymore and I know the resources are being driven into the NHS to save lives at risk so I try to remember this. I feel like the longer it's left the more likely I will be to end up sterile. I'm finding this so hard to process. I wondered if anyone has a similar situation to me either present or past. How are you coping and Is there any stories of hope out there regarding conceiving despite the odds? Thanks for any support. I hope you are all ok in the circumstances.
Cancelled surgery Endometrioma, & fertility - Endometriosis UK
Cancelled surgery Endometrioma, & fertility
Hi Bubblepop, I’m glad you reached out as it really is a tough situation and this forum is fantastic to feel supported..
Are you able to or have you considered doing an egg retrieval before surgery? My endometrioma was 4cm so very different in size to yours but I do regret not having invested in egg retrieval pre-laparoscopy... I am doing IVF rounds now and while I do still get follicles in the right ovary (where the 4cm endo was) there are always noticably less than in the left endometrioma.
I can’t yet offer any beautiful stories of hope I’m afraid as am in the midst of ivf, but in the meantime you should do everything to stay calm and deal with the process and the uncontrollable covid implications on it... I take Boots’ Keep Calm herbal tabs when I’m getting too stressed (they really do calm me down), I have also tried some calming/fertility simple yoga positions than I can send you, and I’ve just started using essential oils in a difuser, which are REALLY calming. Happy to share names/instructions with you. I was definitely a late believer to essential oils (I still think it is slightly mumbo jumbo) but I am loving them!
All the best and please keep in touch if there is anyway we can help 💪🏼🍀
Thanks so much for you kind reply. I'm happy to try anything at the moment, any advice gratefully received. I have a scan at a fertility clinic on Friday to see if they can ge to my left ovary as the right on has pushed my pelvis around. I wasn't going to do a harvest as I was so desperate to just get the surgery done but now there will be time, if its possible then I will. I hope your ivf goes well and you get your baby this year, I have read posts from women saying this is a tough process so I hope you are feeling and responding well! ❤
Hi BubblePop, wishing all the best for you this Friday. Definitely ask all the questions you need to ask, I am a bit of a geek and sometimes take notes to make sure that I go through all of my questions!
If you’d like to share let me know how it goes x
Yes thank you, I will keep you up to date and super advice! I will try to sit with a notebook and thinking all the million questions which I'm sure I will have once I calm down. Will post an updat after Friday. Same goes to you if you feel you want to chat. Xx
Good luck. Making notes and writing questions before hand should help u feel a bit more in control. With me the overwhelming feeling of unknown is really bad... so I try everything poss to try and knock that feeling down 👊🏼
Hi sorry to hear your going through this. I had cysts of 12cm and 10cm one on each ovary at the same time. I had these drained as an emergency due to it pushing on my kidney and it not working as it should. After having them drained they refilled and where 7cm and 5cm after 4 weeks they told me all the same things about tubes may need to be removed however didnt rush to remove the cysts.
I have now just had a 3rd surgery 5 weeks ago due to cysts and endo causing me to pass out.
My doctor has said they dont know if this has affected my ovarian reserve but wont test or start any ivf until been trying to concieve for 2 years which got put on hold due to having to have zoledex injections then the 2 years started again so dont have any success story im afraid. It’s frustrating waiting.
If you get any increase in pain or anything i would go to A&E as this is a sign of ovary twisting.
Feel free to message if you have any questions
Im sorry you havr had a tough time with these cysts. Thank you for replying. I had a short trip to hosp for pain, however my cyst is fused to my womb and bowel so it's sorta stuck! I think they only tested my ovarian reserve because I'm 36 with no children. I am lucky that my consultant understands but the waiting is hard. How do you find the Zoladex? I have heard mixed things. I hope things move along quickly for you and thanks for offering to chat xx
I was on Zoledex for 6 months inbetween surgery and i had a horrible time on it didnt help my symptoms much stopped my monthlys but had symptoms everyday and had to go on HRT with it aswell as got menopause symptoms. Everyone has different reactions to it though and i have had bad reactions to alot of contraceptions aswell.Im lucky with the consultant i have now he has done last 2 surgerys and he specialises in endometriosis which is helpful
Ah that is good that you consultant is a specialist. Mine is too thankfully, every now and then he drops the idea of injections in but I'm just on progesterone only pill. I think I want to avoid Zoladex if I possibly can. Have your surgeries helped your symptoms? Xx
Yeah surgeries helped my symptoms i still get them but not as bad or as frequent as before the surgery. Im currently not on any hormones as ttc so all been stopped so endo seems to grow back quicker
Hi. I'm so sorry to hear what you're going through. I just wanted to offer a bit of hope.
I'm also 36. In mid-2019 I was in a similar position to you. I have stage III endometriosis and, despite having had a laparoscopy to remove it in late 2018 (which showed my fallopian tubes were blocked), had ended up in constant excruciating pain.
I had had three failed IVF cycles, and it was my IVF consultant who recommended I have another laparoscopy. I was given an operation date six months later. While waiting for it, my pain became even worse and continuous and I ended up going to A&E, where I was diagnosed with two large endometrioma on my ovaries, each measuring 13x13cm. In the run-up to the laparoscopy, I was admitted to hospital twice for several nights purely for pain management.
I had the laparoscopy in October 2019 and was advised to try IVF one final time within six months of the operation, when chances of conceiving are supposed to be highest. My consultant recommended having a hysterectomy when the endo returned again, so my partner and I were fairly sure this was our last chance.
Two days before my embryo transfer earlier this year, my clinic called to say they were closing for lockdown and cancelling all cycles. But, because I was so close to transfer and had been taking drugs etc for weeks, they offered me the option of going ahead 'against their advice'.
We decided to go for it. Against all the odds, I became pregnant! It was a difficult pregnancy for reasons unrelated to endo, but I am sitting here now with a healthy eight week old baby boy on my lap.
I would echo the above messages about thinking about egg retrieval now - maybe a good positive way to use the waiting time that this awful pandemic has created. And would also recommend thinking through everything you want to ask and discuss.
There is hope! Prior to this final go at IVF, I had given up all hope of having a baby and had had some very dark days. My endo had got so bad, so quickly, prior to my last operation that I could barely walk, sleep or eat. I was signed off work, bedbound and on incredibly strong painkillers just to get by. The laparoscopy revealed that my bowels were twisted and matted together with endo, and my cysts were, in my surgeons words, 'the size of burger buns'! And yet here I am.
Wishing you all the best. X
Oh my! Thank you so much for sharing as I can relate to so much of that. I am exploring egg retrieval this week! So good to see that despite the odds, you have a beautiful little boy despite, what I imagine was a hellish year for you. It's nice to see that there are success stories and that there is hope, especially in this dark time. Sending love xx
Hi unfortunately you’re not alone. I had a good cry after the announcement! I was lucky to get my laparoscopy in Feb last year, just before the world went to pieces. I’d had a delay of a few months for an allergic reaction to the first surgery (which was tested and was fine). Then my fertility and post op appointments were cancelled due to covid. I didn’t even know what they’d taken in surgery! My surgery was delayed on the day so it was late when I was discharged and I saw no doctor.So I complained and got a phone consultation and then have been waiting for a hysteroscopy since last March. I have a date finally for this at the end of January and am waiting to see if that goes ahead.
But on a positive I have had an initial ivf appointment and bloods and scan (which shows I do need the hysteroscopy before starting).
Try accupuncture, a fertility specialist. I had a recommendation, but I think Zita West’s site has a list. Also the fertility network has weekly fertility yoga. I got the link from Instagram.
I’m turning 38 next month so feeling like covid has ruined it all. But we can’t lose hope.
Ask about egg retrieval pre op as you’ll likely have time. I wasn’t offered it and my reserve went down post op.
Best of luck x
Oh Ganges, I'm so sorry you had to go through all that uncertainty. I really hope everyone is sensible to take the weight of the NHS so they can help us all really soon. I have a fertility apt. Friday where they will scan to see if they can get to the 'good left' ovary to do a collection. I'm a little worried that having the oestrogen to stimulate my ovaries will make my endometriosis worse but I guess I can ask about that risk. Also, my AMH is only 1.4 which the consultant said was low and unlikely to yield many eggs. I think I will need a miracle. Praying we all get the treatment and families we desire this year. Thanks for your response. Sending love xx
That’s good that you’re under fertility and hopefully getting eggs collected. Some good news stories, my cousin is pregnant after first ivf round and she has had lots of endometriosis surgery. Also another friend who is 43 is pregnant after 4 rounds and this was their last egg and final go.
Take care and I’ll have my fingers crossed for you x
I am sorry you are going through this. In a way I can relate, as I had my surgery cancelled,just before Christmas. Although mine was to remove both ovaries. I know I am lucky to already have 2 beautiful children. Which was a miracle, as I also have pcos. Sending you light and love.
Thank you! That must have been hard but such a blessing you have your children. Have you had your surgery rescheduled or are you still waiting? Love to you xx
I am still waiting, unfortunately. They did say it could be sometime in the New year, but so far I haven't heard anything. X
I think waiting is the hardest part sometimes. Just having a plan is so helpful in my mind. Do you have any numbers you can call to ask? I really hope you hear soon and if you feel comfy, update me. 😊
I think you are right, I feel like I'm in a holding pattern, waiting to hear. I do have the department number. But I don't want to hassle them. I will keep you posted. X
Hey Bubblepop, so sorry to hear about what you're going through. Similarly to you, I have 2 Endometrioma's, 1 on each ovary measuring 11cm and 9cm. I also have stage 4 endo, and had issues with my tubes. Like others have mentioned I have been admitted to A&E and stayed in hospital previously a few times due to pain.
In Regards to IVF, I had my endometriomas drained in preparation for IVF and within 4 weeks they had refilled to about 7cm each.
I changed clinic and they were able to use low doses of meds to get good quality embryos whilst being mindful of my endo. If possible, and if your fertility is a primary concern I would recommend exploring your options with retrieving and storing eggs whilst you wait for things to settle back down with covid and Hospital appointments re: lap X
Thank you! It's nice to find people in the same situation and who understand. Originally I was advised to wait as surgery was so imminent but I guess I have time now. Im sorry you had to have the difficulty of the endometriomas returning but best of luck with your ivf. I hope this is the year of good news for all of us xx
Thanks. Fingers crossed! X
Hi bubblepop
So sorry you're going through this. Have you considered alternative ways of treating the endometrioma?
Chinese medicine could shrink it for you. There are over the counter meds such as serrapeptase and n-acetylcysteine too which could reduce the size. Something would be better than nothing.
I haven't had an endometrioma but have had small amounts of endometriosis shrunk and gone from my bowel thanks to chinese medicine and acupuncture. I have before and after pictures.
If you are in London / want the details of the above happy to discuss via private message.
Best wishes
Hi roshsp2012 I have to admit, apart from praying, I have not but I have started reading 'It starts with the egg' by Rebecca Fett and n-acetylcysteine is mentioned in there for endo and egg health. I have some in my Holland and Barett basket at the mo! Sadly, I am all the way in Norfolk. Thanks for the offer to chat, nice to know as I go through the journey I can ask for some advice. Really glad you have managed to help your endometriosis. Xx
As promised, a little update. I went to the fertility clinic for a scan to see if they would be able to access my good ovary. Unfortunately, they could not see or get to it so egg retrieval is not an option. I just have to wait until my surgery. Sadly, my AMH is 1.5 which i am told is low and I have also been told surgery may lower it even more. I have no idea what this means for my chances of having any babies. Does anyone know if once you heal, your ovaries recover their reserves or is that it? My AMH is too low to receive any funding for IVF so I spose we should start saving. Hope you are all well on your journeys xx
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