Endemetriomas: how likely to grow back?

I recently had a 9cm endemetrioma removed from my right ovary; I know that it was cut away rather than simply being drained. Soon I'll be going to see the consultant for the follow up appointment.

My question is this: What proportion of women that have these type of cysts removed end up growing more?

And, what is considered the best method (aside from oophorectomy) for preventing a recurrence of endemetriomas?

From looking on this forum, it seems like there's a strong likelihood of getting more, but I'm wondering if anyone has any idea how common recurrences actually are...

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  • This is my experience. I have had 4 laps to remove endometriomas. The last three were excised by a specialist at a BSGE centre. After each lap, apart from the most recent, I have refused hormone treatment and tried to look at diet, herbal remedies and exercise in the hope I'm not going to get any more. I don't think it's the case that the old ones are growing back, I just think new ones keep growing as the consultant does excise them thoroughly. I just think I am susceptible to them. The 4th lap was done a few months ago and I am now taking progesterone only pills, I can't say yet if this has helped but I wanted to try something different this time as previous alternative remedies on their own haven't really helped (although the cysts may have been even bigger without this). However, that's not to say they won't help you, everyone reacts differently to various treatments and you have to find the ones that suits you. My consultant said I am likely to grow new endometriomas without hormone treatment after a laparoscopy to excise, going on his years of experience. I read that endometriomas are more likely to recur than other forms of endometriosis. You can look up percentage recurrence rates on the internet but it is difficult to say how much you can rely on these statistics.

  • Thanks, that's really helpful. sorry to hear you've had to go through 4 laps :(

    I don't particularly want to take hormones; I would prefer a more natural approach, but I also want to be realistic.

    Is there any particular reason why you were given (or opted for) the progesterone only pill over the Mirena coil or combined pills? And are you taking it continuously (no breaks)?

  • I opted for progesterone only (continuous without breaks) instead of combined pills because I was concerned about the oestrogen content in the combined and I read that oestrogen makes endo worse. However, I am a bit confused about this as many women with endo are given combined pills. My consultant agreed also that it was the best way forward. In terms of the Mirena, I am concerned about it not working and causing terrible side effects without the chance of it being taken out until 6 months time. I also have adenomyosis and think that I don't want to add anything that could cause further problems to my uterus. To be honest, I haven't been getting on very well with the progesterone only so far (lots of breakthrough bleeding and pain) but it's only been a month.

  • SORRY FOR LONG POST!

    Yes, I understand where you're coming from with all this - i'm trying to understand what different hormones do and what is the best way to get my hormones balanced in a way that will relieve symptoms and prevent regrowth. My endemetrioma was 9cm, so quite big, but I do not have adenomyosis (I had an MRI and as far as I understand it, it would have been picked up then - I may be wrong, not totally sure about that).

    What I've read about the Mirena is that for some it works wonders; for other it causes terrible pain for 6 months or more, and then after that works wonders; and for others it creates terrible pain and it continues that way and never improves. So it's something of a gamble.

    When it comes to the combined pill, isn't the oestrogen created by ovulation more powerful than that found in contraceptive pills, and the effect of not ovulating for months will overall lower your oestrogen levels (in particular oestradiol) despite the fact that you are taking oestrogen? I think that's the idea (anyone who wants to correct or amend what I'm saying, please feel free!). Elsewhere I have read that it's not so much that oestrogen is the problem, but the balance of oestrogen and progesterone; Endo suffers may lack progesterone, so progesterone cream or pills are what is needed. I would really like to have my hormones tested to understand what is lacking/what levels are too high, but there are numerous difficulties with that, as the NHS do not really take this approach, so to get a test you have to go via a naturopath and pay around £70. I don't know how much I trust private companies doing lab tests by post (btw there are threads on healthunlocked regarding hormone tests for eostrogen, cortisol etc).

    It seems clear to me that hormonal balance is key to what is causing my health problems, and I wish experimenting on myself by trying one pill/coil and then another and another and hoping one works (whilst accumulating various side effects as I go) wasn't the only answer.

    I have been on both Femodene (horrible emotional side effects and depression) and Microgynon (reduced period pain and heaviness a little, caused mood swings and hyperpigmentation; after about 3 years the pains and heaviness returned as before). Those are both combined pills.

    Well, I feel like I've thrown a lot more confusing elements in the mix, but no answers as such...sorry about that.

  • Thanks for all this information, no need to apologise, it's great to know as much as possible. I will consider the combined pill if the progesterone only doesn't work. I totally agree with what you say about experimenting, I wish I didn't have to do it too :( The problem is certain treatments work better for different people and the only way to find out what suits you is to try them. I think a combination of natural and conventional medicine is best. I will let you know after months of being on progesterone only whether it is any good. Hope it all works out for you.

  • I've had 3 laps so far to remove endometriomas and disease. First surgery, I didn't know better and just had my 7x7cm cyst drained. Of course it refilled and by my second surgery it was 10-12cm and I also had a new smaller 2-3cm endometrioma growing next to it. This time I had them excised.

    My next and most recent surgery I had several endometriomas on this same ovary again, the largest being 6cm and also an endometrioma on my other ovary.

    I must be susceptible to them, although I'm not sure if the surgeons did the best at excising all the disease? Apparently it's not common at all for them to grow back after thorough excision, (I can remember figures quoted, sorry) but for people like me, they can be more than a nuisance and your body can grow new ones.

  • I just wondered what hormonal treatment you have been offered and taken Flowerpotts? I am also susceptible and as I have said above I have been put on progesterone only pills.

  • I tried googling it, and found this:

    ncbi.nlm.nih.gov/pubmed/100...

    Quite old, seems to be from 1999, quite a small group (377 women) were monitored. Not sure how conclusive this is but it says there was a recurrence in 7% of cases.

    Then I found this from Brazil, (97 women, over a period of 5 years) which found that there was a recurrence rate of 40.2% (at a mean postoperative period of 34 months):

    medwinpublishers.com/OAJG/O...

    Here's the 'results' section of the study:

    'The mean age of the patients was 33.8±6.6 years. Mean age at menarche was 12±0.7 years and BMI was 25.4±4.9 kg/m2. We observed that 46.39% of patients were nulliparous women, 7.22% were asymptomatic and 46.6% reported having infertility. The most frequent symptom was dysmenorrhea (82.6%). The left ovary was

    most commonly affected (62.6%). All women had advanced stages of endometriosis (III or IV) and mean endometrioma size was 4.1±3 cm. The recurrence rate was 40.2% at a mean postoperative period of 34 months. There was no significant statistical difference between age, BMI, duration of dysmenorrhea and dyspareunia and size of the first endometrioma in the moment of the surgery in women with and without recurrence, but there was a significant difference in the

    duration of pelvic pain among these women (p=0.04) (Table 2).

    There was a significant association between a higher recurrence of endometrioma and the presence of other foci (p = 0.03). Early-stage endometriosis has a lower chance of recurrence than advanced-stage endometriosis.'

    ---

    Medical research methodology isn't really my strong point, so if anyone think they might have reliable and relevant statistics on recurrence rates, it would be very interesting to find out more...

  • Thanks for looking into it. I think maybe because I went so long without being diagnosed (from 15 to 32!) and the first op was ablation by a general gynae, that it allowed the endometriomas to get to such an advanced stage to make recurrence much more likely :( This is, as I said above, alongside refusing hormonal treatment for ten years as I wanted to go down the natural route.

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