Returning endometriosis

I would like to find out more about returning endometriosis.

[Purple_Badgers]

Hi, could you give more context to your question at all? It helps if you can say a little bit about your own situation, why you’re asking and what exactly you would like to know.eg. returning after what?

You can also search this forum for previous posts on the subject. Try keywords - returning, returned, return, post surgery, post treatment, or something more specific to your query.

All the best x

[Lily1986]

I have stage 4 endometriosis which continues to return worse each time despite numerous surgeries including two excision and removal of tubes and left ovary. I get less than a years relief each time,I’m only allowed one more surgery due to extent of scar tissue and damage already caused to nerves. This surgery would be total clearance and likely permanent stoma.

I’m reluctant to have this surgery as none of the others have helped at all, in fact they’ve ended up in me being in more pain,

[MyStar86 in reply to Lily1986]

I do feel your pain I’ve had multiple surgeries and this year a total hysterectomy with everything removed I’m 35 I also have osteoporosis and nerve damage however recently I’ve been getting pain down left side of my bowel where I had a lot of endo removed from and before hysterectomy I only used to get this at the time of the month but now I get it almost every single day it hurts to sit, stand or lay down. I can’t tolerate opioids or ibuprofen style meds and I’ve tried nerve meds nothing helps…..I’m so scared it’s the endo coming back but either way it bloody hurts.

Hope someone can come back with something positive for you. Are you on any longterm treatment not that progesterone did much to stop my endo but are you taking some form of hormones to slightly help? Xx

[Cockapoo-2016]

I had my surgery back in November 2021 removal of endometriosis ovary and rectovaginal.

Unfortunately endometriosis can grow back after surgery it doesn't cure it, back in April 2022, I had a ultrasound scan, the scan confirmed that the endometriosis is growing back just 6 months after having surgery.

I was offered the mini pill to slow the growth of endo diwn which I felt for me wasn't the right choice due to my age and other health issues.

I took another route by being under the care of nutritional therapist who is helping me to deal with my endometriosis.

I've been put on a gluten free diet and dairy free, which can help to balance your hormones and stop the endometriosis from flaring up when yiur due.

Eating lots of fruit and veg helps to contol the pain from the plevis and flare up.

Eating chicken, eggs and avocado also helps with hormones and endometriosis.

Eating salmon can help to control inflammatory, turmeric.

There are books you can read for endometriosis ie the endometriosis diet book or books that women have written who suffer from endometriosis an example a book written by Bethany Stahl called endometriosis its not in your head it's in your plevis.

Research on website more about endometriosis returning.

Hope this has helped answer your question.

[Lindle]

The word that applies to this is 'recurrence' rather than returning. There are several things to consider:

What do we mean by recurrence? This can be defined as pain returning or actual lesions being diagnosed again on a scan or at a lap. And if lesions are seen on a scan after a previous surgery is the really recurrence (of new lesions) or progression of lesions that weren't fully excised?

The main risk factors for recurrence are generally taken as:

1) The severity of the disease at the time of surgery: the more severe the disease, the more likely it seems to come back.

2) The completeness of lesion removal: if some lesions are left behind during surgery they may regrow with time.

3) The use of medical suppressive therapy following surgery: usually reduces the recurrence of pain symptoms of endometriosis. But it should be noted that this is more likely to be effective at slowing mild endo and not severe disease.

Source: Seckin

This is a useful article:

ncbi.nlm.nih.gov/pmc/articl...

Quote:

'Risk factors for recurrence

There are a variety of factors that might be related with the risk of recurrence whether clinically or surgically [8]. However, there is paucity of data for a predictive tool that would be useful in all subgroup of patients. Li et al. reported that (n = 285; 36 months follow-up) bilateral pelvic involvement of endometriotic lesions, previous surgery, tenderness-nodularity at cul de sac, postoperative high revised American Fertility Society (rAFS) scores, younger age are all risk factors for the recurrence. One of the largest studies by Liu et al. [9] had followed up 710 patients after endometriosis surgery for an average of 22.4 months. The authors defined the term of recurrence either presence of an endometrioma during more than two consecutive menstrual cycles or relapse of pain. At last, they noticed that previous surgery, previous medication usage, younger age at surgery and total rAFS score are all risk factors for the recurrence of endometrioma. Of note, for both types of recurrence, although the hazard rate was constant in the first 28–30 months after surgery, they dramatically increased after that time.

All the available studies are not agree with the risk factors that had been mentioned above. Some authors reported that age at menarche, parity, previous medical treatment of endometriosis, age at surgery, BMI, size of largest cyst at surgery, co-existence of uterine myoma at surgery did not significantly affect recurrence risk.

Not only the severity of the disease but also the extensiveness of the surgery might affect over all recurrence risk. Fedele et al. [10] evaluated symptomatic patients with endometriosis in the bladder (n = 47) and stated that the wideness of the surgery is important for recurrence. Similarly, Vignali et al. [3] reported that the completeness of the first surgery is a prognostic factor for recurrence for those operated due to deep infiltrating endometriosis. Other related risk factors are given in Table 1. Meanwhile, efforts to distinguish a risk factor among adolescents have been failed, as reported by Tandoil et al. [11].'

[Goiaba]

I am currently treating my third recurrence of endo. I decided to treat it with a different doctor and having a different point of view was eye opening. He said after excision surgery there is a 30 to 40% chance of endo growing back if not suppressed by hormone treatment. Mainly, if your ovaries keep procuring estrogen it will feed hidden lesions and promote growth - this is exactly what happened to me twice. He also doesn’t perform standard laparoscopy on endo patients anymore and only recommend robotic surgery as this gives more precision and you’d have better chances of it not returning the equipment allows the doctors to see and find more lesions. I’ve tried chancing my diet and lifestyle, excision only, excision + removal of left ovary and both tubes, Mirena (I also have Adenomyosis) and unfortunately it keeps coming back. The next step is a full histerectomy with removal of the remaining ovary. Until I can have surgery (waiting list at my trust int he UK is over 1 year) I will be on prostap injections and HRT to manage symptoms and possible long term complications. This will be my 3rd surgery in 2 years and I’m 29 years old.

[Lindle in reply to Goiaba]

Do you have severe endo and are you under a specialist centre?

[Goiaba in reply to Lindle]

Yes and yes. Have recently changed drs but he’s a highly qualified and listed on BSGE

[Lindle in reply to Goiaba]

I'm so sorry as you must have really aggressive endo at such a young age. But severe endo isn't driven by ovarian oestrogen - it makes it within its own cells by a process that doesn't involve the ovaries. Hopefully your surgeon will be skilled enough to remove whatever endo is left when you have the hysterectomy. Remember that the HRT you are put on must be combined or tibolone and not oestrogen only.

Robotic surgery doesn't give more precision - ultimately it is all down to the skill of the surgeon and not the tools used. Some favour robotic while others favour traditional lap surgery.

consultqd.clevelandclinic.o....

I hope it all goes well.

[Goiaba in reply to Lindle]

That is so helpful, thank you for sharing. I see in the article they mention it might be a better option for ureter resection which is what I need, although not tested it may justify the high prices (or long wait in the NHS). I really trust my surgeon’s skills but it is so difficult when you go to an appointment and feel empowered and informed but then start your own research and find conflicting information. It’s mentally exhausting. Hope time passes quickly. Thank you very much for your help!! Xx

[mimilover]

Hi thereWell ……..this was my huge mistake (or there’s no blame or mistakes ……BUT no one told me it had roots.

After the first surgery and then a second surgery………..long story short …….I life of pain all Becaise I was on estrogen after menopause. It kept feeding my endometriosis.

So it should be dormant after menopause and if you take any estrogen please make sure it doesn’t make endometriosis active. I recently found out after being on ESTRADIOL for years…….thinking oh this really helps my feel young and alive…….while at the same time I was in horrendous pain everywhere (pelvic, colon, back, etc) that kept getting worse …….until age 62!!!!!

I went to a dr (after many others) who said “don’t you realize this is your endometriosis and that IT HAS ROOTS and this estrogen makes it grow like watering a garden” !!???

I came home and flushed the rest down the toilet . All of the pain I’d been tortured with went away within a couple months. My back took the longest and now I’m 64 and that’s finally gotten better. I can’t believe I never heard the root thing……I had asked many questions and got rushed out the door ………….for years .

I’ve now heard several things …….

A).I could have had a specialist get the roots.

B) I could have taken a different estrogen

C) no estrogen what so ever.

So ……although I’ve had many hot flashes at this age …that’s fine …so C) has been my solution .