Just posting to see if anyone has been in the same position or can offer any advice!
I had surgery last June where they found stage 4 endo. I had 2 large chocolate cysts one on my left around 8cm and the one on my right 10cm. The surgery wasn’t done in a endo centre which now I realise probably should have. He didn’t remove all the right cyst due to bowel involvement. I was on Decapeptyl for 3 months and re scanned and there was 2cm left of cyst on the right ovary.
Fast forward to now, we are currently trying to conceive so I am not on any medication. I paid for a private pelvic ultrasound due to pain and a lot of my symptoms returning as the wait on the NHS was 3+ months. The ultrasound now shows 3 chocolate cysts on my right ovary and collectively they are now approx 10cm. Left ovary does not have any cysts but both ovaries kissing.
I ask to be referred to a specialist centre a while back as I had a feeling they would return! But my phone call isn’t until April. I am due to have my bloods done for fertility next month to be referred the following month.
Has anyone else been in this situation? It’s been 4 months with no contraception and my cysts have continued to grow. If I wait with no form of contraception/Decapeptyl for another 2-3 months my pain will continue to increase and so will the cysts. But the NHS won’t refer me until we’ve been trying to 6 months?!
Any advice would be great!
Thank you
Written by
Amy2106
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You are being treated totally inappropriately. The treatment of severe endo is laid down in legislation in England and must be treated in a specialist endo centre. This doesn't mean it has to be a BSGE accredited centre (although most are) but if it's not then they must still be recognised as a tertiary endo centre with a named multidisciplinary team working together in a centre setting with all the same facilities and standards applied as required by the BSGE. If the person who operated on you was a sole general gynaecologist then this was against regulations and you should complain really to stop it happening to someone else. As soon as he saw severe endo he should have come straight out and referred you on to a centre for a detailed MRI to map your pelvis before a discussion took place as to the best treatment option, usually an excision lap planned by the multidisciplinary team.
Stage 4 endo means your uterus is glued to your bowel with your pouch of Douglas (what should be a space between the uterus and bowel) full of endo fibrosis (adhesions). In addition you have kissing ovaries so they have been drawn round to the back of your uterus and glued down as well. This is called a frozen pelvis where all your reproductive organs are one mass glued together. The statistical chances of natural conception with this scenario are pretty much zero as an egg coming out of your ovaries will pretty much have to search your pelvis to find a tube to go down, (that is if they are clear). But the most important consideration is what would a pregnancy mean. There is no way of knowing for sure, and rarely women do conceive and maintain a pregnancy with stage 4, but just imagine your uterus swelling to the size it has to when it is stuck to your bowel and both your ovaries. The pain can be utterly excruciating and might bring with it many potential risks and complications.
You already run the risk of an endometrioma rupturing which is an emergency situation and crippling (I know from personal experience). If you did 'just' have endometriomas then maybe a regular fertility service could treat you but in your situation of having severe rectovaginal endo you must only be seen in a specialist centre who are required to have access to their own fertility service. Treatment of endo in centres is for pain and/or infertility. You absolutely don't have to prove infertility as you qualify for referral on the basis of pain and as said getting pregnant now could put you at great risk. It is vitally important that you are assessed as a whole to take account of both the severity of your endo and what that means in conjunction with your pregnancy wishes.
I'll link the NHS treatment specification to print and take to your GP - have a good read your self so you are familiar with what they should do.
I'll also link the ESHRE guideline as this goes into detail on the recommended treatment of endo associated infertility with reference to the three types of endo, including endometriomas and rectovaginal disease (full guide on the right of the page):
As far as I am aware I was operated on by a general gynaecologist with a special interest in endometriosis which now I’ve looked back was likely not appropriate.
I have now been referred to a specialist centre but only through myself asking the GP but my appointment isn’t until April. But thank you I will mention to my GP and see if this can be chased/made more urgent.
Your could run the risk of losing a ovary , the pain will increase too , your needs to get your gp to push for you .
Get in contact with pals or your hospital and put a complaint in as that’s lack of care and left you to suffer .
You should of been referred straight after they confirmed it was endo when you had your first op.
Fertility wise there’s nothing you can do at the moment with those big cysts so I wouldn’t even try as they could burst and leak inside you and wouldn’t be the right environment for a baby just yet .
It turns out where I had my first surgery now is now a provisional centre for endo so I can be followed up from there. My GP has sent a letter to him this morning so hopefully I hear soon otherwise il just pay for a private appointment with him to get it moving! Thank you x
Back in 2020 I was in this situation, but then GP referred me to endo clinic and the endo nurse then referred me to ivf clinic rather than the gp referring... we had been ttc for 5 years though so qualified. Still waiting for endo surgery in 2024, to then start private ivf after zolodex - nhs waits are huge for fertility treatment or preservation, and you have to qualify with a case that is reviewed by a panel. Currently no funding for endo patients to have eggs frozen before endo surgery on nhs unless the amh count is particularly low and depending on your local authority. I was told just last week that there is no possibility of eggs being collected before endo surgery due to two large choc cysts on each ovary, kissing in pod, with bowel stuck between the ovaries... they just can't risk the cyst rupturing during the process - fingers crossed the endo surgery is this year, on the wait list still so we will see.
Hi Amy. I was diagnosed with Stage 4 back in 2010 when undergoing investigations for pain and not being able to conceive. I had a 10cm endometrioma that had been twisting. Once discovered, my surgery was within 8 weeks but this was because the cyst was concerning them. Also, this was pre-COVID times before such mass disruption affected the health service so I was treated quickly.
A few things to note:
It’s important to be aware that the term Stage 4 is used to describe the disease when endo has invaded an ovary and there are deep implants. It doesn’t necessarily present as having all pelvic organs glued together and although this could be the case for some patients, it’s not necessarily the case until a laparascopy clarifies the anatomy.
Endo centres are a very good new thing but endo has been very well treated by gyn consultants / surgeons for a long time before endo centres were set up. Some of these same clinicians continue with the work they’ve always done but it’s now simply called an endo centre. So don’t worry if your surgery wasn’t labelled as via an endo centre. They still know what they’re doing! My gyns back in 2010-2012 were excellent in their care of me and ensured that through all my big surgeries (x3) that ovarian tissue was preserved and fertility treatment was always the main focus of clinical plans.
After my 2nd surgery, I was put into chemical menopause (Prostap) to stop further cyst growth whilst being on the ivf waiting list. I was on Prostap for 6 months (with Tibolone to help with side-effects). After that, I was cyst free and endo calm to start IVF (ICSI). The aim is to keep ovaries free from cysts to allow maximum egg retrieval during a cycle. Cysts get in the way of this which is why they’re are a problem when trying to conceive.
It’s also important to note that pregnancy can happen with endo and though I had a complex pelvis, we persevered with treatment. In my case, adenomyosis was identified making implantation impossible. I had 14 embryo transfers over 7 years and got pregnant once and unfortunately, it was lost within weeks of the positive result. Before you go down the road of IVF, ask to be scanned for adenomyosis.
To summarise, hang in there til April. Things will start moving once you’ve had your consultation in terms of treatment pathways. X
No worries Amy. It’s certainly a hard road but aim to be realistic and hopeful at the same time. Stage 4 isn’t a joy and can be so utterly destructive. The main thing is that you balance your quality of life with your family planning. We ended up trying to adopt which comes with its own set of challenges. Good luck x
Hi Diagnosed back in 2021 I had my lap last Jan I have a cyst on each overy and my right hand side has stuck by bowel and my overy and tube hiding behind it. They only drained the left hand side I was put on zoladex to stop refilling whilst I did my cycle of IVF due to concerns of cancer on my rhs I only had 3 eggs taken from left side I got 1 embryo I was pregnant and miscarried. Fast forward to this year 2nd cycle canceled before I even got to egg collection due to cysts being in the way and not safe as they don't want to pierce anything gutted. I wanted the surgery just to get it gone feel like it's hindering everything I don't realli have pain so my only reason is for ttc.
It's a lot to think about as also stage 4 it would prob grow back and the possibility of bowel resection and possibly stoma bag it's a lot to take in and feel there's a hurdle at every moment. my womb is ok actually not effected I'm currently waiting to have a dye test done on my tubes to make sure there not blocked and no fluid in them etc and am considering donor eggs jus my choice as I have a low amh also but keep fighting it's hard as hell but I hope u get some answers soon.
my follicles this cycle was growing above the cysts instead of under them so it all depends apparently each cycle is different hence why I was cancelled so yea they can be a problem so jus something to keep in mind good luck x
3.2x31 and 2.3x2.1cm so I had one drained so mite be an option if ur doing IVF for them to get drained first then they put u on something to stop periods as that's when they refill. Be carefull about removing them completely as this can harm ur eggs and reduce ur numbers obvs if the cysts aren't that big and can be accessed then great but also my follicles were growing above and couldn't be done safely x
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