I have a small endometrioma/ ovarian cyst on my right ovary (1cm, this was not on a scan 12 months ago) and have been diagnosed with endo.
I don't know whether to go on the pill to try and supress the endo, or to have the lap to get rid of any other endometriosis tissue (excluding the ovarian cyst). Two consultants have provided different advice; one said they would recommend the surgery, the other sees a lap as the last option and wouldn't recommend it at this stage.. What would/have others done in this position? I thought that if it can be seen on the ovary then it is likely to be an advanced stage already. Has the pill been affective in supressing endo for you?
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Bamboo92
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How old are you if you don’t mind me asking? It’s not a major factor but if your young and childless. It’s likely you may have multiple laps over the years if you start now due to reoccurrence: If the pain can be managed with medication I’d lean more towards that as surgeries themselves can have complications especially if it’s not an experienced surgeon. But ultimately you have to do what you think is best for you. It’s your body
thanks so much for your message. I am 29. I've had bad periods all my life but more recently i've had more pain throughout my cycle and heavier, longer periods. The consultant who would be doing the surgery is a specialist in endometriosis so that gives me some reassurance if i choose that option.
Endometriomas are almost always associated with rectovaginal disease so yes you could have an advanced stage already elsewhere. Whether or not this would have shown on the scan depends on the skill of the sonographer - regular ultrasounds only look at the uterus and ovaries - detecting deep endo is a highly specialised skill. This is why so many women are told they don't have endo after a TUS when they do.
There would usually, but not always, be symptoms to suggest deep RV disease such as lower back pain, leg pain, stabbing pains up vagina/rectum, pain with deep sex, bowel issues predominantly on the left side, but again not always.
Please be aware that the pill doesn't stop endo progression, it just treats symptoms and the danger if you take the pill to mask symptoms is that the endo can progress until it no longer controls pain and you are then in a situation of needing a complex surgery down the line which might not resolve all the pain by that stage and which would be far more invasive than a diagnostic lap would have been early on.
The most important factor is that you are only treated by a gynaecologist with a special interest in endo (so some specialist training) and not just a general gynaecologist. The view that a lap is a last resort is very much a general gynaecologist view along with waiting until you want a baby, have a baby to 'cure' it and other such myths. The presence of an endometrioma is very important in your assessment of the best way forward. I suggest you have a read of the ESHRE guideline. Here are some relevant extracts:
1.3.1 Laparoscopy in the diagnosis of endometriosis
Clinical evidence
In women with symptoms and signs of endometriosis there is an argument for starting medical treatment before embarking on an invasive procedure like a laparoscopy to obtain histological proof of the disease (as mentioned above). Arguments to perform a laparoscopy include the woman’s wish to have a definitive diagnosis, infertility and/or symptoms and signs of advanced disease (ovarian endometrioma and deep infiltrating disease). If signs of deep endometriosis or ovarian endometriosis are not present in physical examination and imaging, it can be argued that a diagnostic laparoscopy should not be performed just to find peritoneal disease and treat it, especially in adolescents and young adults. It has not been shown that treatment of peritoneal disease influences the natural course of the disease.
2.1 In the section on medical treatment, we focus on women in pain due to diagnosed endometriosis.
Studies assessing treatment of pain without a diagnosis of endometriosis were not assessed.
However, it should be noted that women suffering from pelvic pain with a high suspicion of
endometriosis use empirical analgesics and hormonal medication without a prior definitive
laparoscopic diagnosis. This is in part due to the invasiveness of the laparoscopic procedure, but also due to the ease of prescribing hormonal contraceptives, which would be prescribed for prevention of pregnancy anyway. Before starting empirical treatment, other causes of pelvic pain symptoms should be ruled out, as far as possible. It is common practice for laparoscopy to be performed if the patient does not react favourably to the prescribed medical or hormonal pain treatment, to exclude or diagnose endometriosis (and possibly treat it at the same time). However, response to hormonal therapy does not always predict the presence or absence of endometriosis (Jenkins, et al., 2008, Ling, 1999). It has to be emphasized as well that prescribing oral contraceptives in adolescents with pelvic
pain without a definitive diagnosis of endometriosis might contribute the well known delay in diagnosing the disease. It has been argued that starting oral contraception in young girls because of primary dysmenorrhea could be indicative of the diagnosis of deep endometriosis in later life (Chapron, et al., 2011).
From an experience level; I didn't know I had endo at 15, was put on the pill at 18 by the GP (to treat heavy periods, headaches and cramps) it worked for about 8 years, then I started to get symptoms even through the pills and even taking them back to back for a further few more years. I couldn't bear the side effects of the pill after that long (emotional ups and downs, irritability, argumentative, migraines, weight gain, sleeping a lot) so came off the pill. All my symptoms came back but worse, also had pain during sex, back pain, shoulder pain, irritable bowel, recurrent thrush, constipation, rectal pain. I finally thought this can't be normal so demanded an endo specialist. At 34 years old he said it's definitely endo, and all my symptoms are not normal. He did a diagnostic lap and excision. Nothing showed on ultrasound which is expected, it was just to check for structural problems and PCOS. I had endo on my bladder, uterus and bowel, sticking them together, I needed two surgeries close together to remove it all, and an additional colorectal surgeon. It's stage 4 which is extreme. My specialist said if I'd been listened to before I should have had the surgery years ago, when my pill stopped working. I didn't know back then we need to push for a diagnosis. I've had a further operation at age 37 which my endo has returned but all excised. Just thinking I could have had a relatively normal life in-between surgeries during my 20s rather than relying on hormones and painkillers thinking and being told it's all normal.
I'd say if you're given the option have the laparoscopy but by a specialist as they'll be able to excise your endo, check all other structures and then you'll have more chance to live normally for a bit. Some women on here do go on hormones after the pill as they feel it's right for them (I didn't) it does help slow growth and can give some women that time to make a decision about surgery. Ultimately though surgery is required as the endo needs removing. I was lucky with mine as I only needed two laparoscopies initially, had I left it a few more months / year it could have been a laparotomy with bowel resection. Not meaning to scare you, just telling you how it is.
It's useful to know that the amount of endo doesn't correlate with symptoms so it's difficult to tell what things look like inside. Leaving surgery may be fine but endo can perforate organs and potentially require emergency surgery (non specialised). Personally I think had I been in a position you are years ago I'd have the diagnostic laparoscopy with a specialist endo surgeon to see what's happening inside, discuss options including hormones, and severity of endo, then either go on the pill to manage symptoms for a while or choose an excision laparoscopy. You can always go on the pill after surgery.
I guess the main thing to ask yourself is do you want to know what's going on inside your body then make decisions / choices or just leave it for a while - knowing it could get worse and could be more severe later. Yes you may need more surgeries, and you may not - endo regrowth isn't always the same even after each operation.
Thank you so much for sharing both, this is all incredibly helpful.
Both consultants I have seen are specialists in endometriosis.
I do have back pain, pain that radiates down my legs, sex which has become a bit uncomfortable more recently, which might indicate it is more advanced. I don't have issues with bowels atm.
The consultant who suggests holding off surgery for now said she couldn't feel any nodules on examination and therefore thinks I am only stage 1 or 2, but as you all say I think you can only really know for absolute certain through a lap? She was of the opinion that i'm likely to have a few surgeries in my life and I may as well hold off until I really need one e.g. if i can't get pregnant further down the line or something, or if my symptoms and pain aren't helped by the pill. She also recommended a more holistic approach including avoiding certain foods etc. plus hormones, and also did mention that pregnancy can sometimes help and reset things..
It does worry me that taking the pill could just be masking the symptoms and I wouldn't really know how bad it might be getting. I think I am leaning towards the laparoscopy, the consultant has confirmed this would be done by excision.
Sounds like you now know what steps you want to take
The diagnosis for endometriosis can only be carried out through a laparoscopy. It can be suspected by other methods such as internal examination, ultrasound and MRI but these will not show endometriosis itself; it shows the effects so organs out of position / stuck together, adhesions, scar tissue which can help surgeons determine the best surgical route during a laparoscopy once inside. So they are useful but not for diagnosis.
The website may help too. It's the UK Endometriosis Charity. I've found it really useful for symptoms, what to ask your specialist, treatment methods, case reports. Lots of information.
Diet wise, there are things that can help with symptoms due to the nature of the foods, but it's not a fast fix, most diet changes can take up to 8 weeks to have any effect. And some things may work, some you may not like so it's a case of trial and error. Here's what I've found:Reducing dairy, particularly milk - less bloated, less spots, less tired and less gassy. I have found I can still eat cheese, cottage cheese, and yoghurt including kefir as these are fermented so the body reacts better to the proteins. Opt for alternative milks such as almond and oat. I love coconut milk! Most supermarkets do their own brands and they are really good if not better than the big brands. Check they have added iodine (something which is needed in a non dairy diet), or supplement.
Avoid soya products; soya can mimic oestrogen thus quite often makes symptoms worse.
Reducing white wheats and over processed wheats - less bloated, less cramps during periods, and less puffy. I rarely have toast, if I do option for the brown spelt or rye, non fortified. Wholegrain cereals if I really want them. Oats are more filling so muesli is a good choice. Spelt and rye breads are good, as are rice cakes.
More fish - this is a good one! Fish contains omegas which are essential oils our body needs for good brain function and coats our nerve cells. Opt for oily fish such as salmon and makrel - better in summer! They will naturally reduce pain. If not a fan of fish supplement with flaxseed oil capsules.
Add in natural pain relief such as: tumeric, black pepper and pineapple to your diet.
I have regular aromatherapy and massage a few days before my period, the lady is amazing as she is also a nurse so knows about endo. I have a little pot of oil mixture to add to baths to help when irritable / stressed / pms, and one to put on my stomach three time a day for 5 days before and during my period to reduce cramps. She makes them according to what seems to work and the smells my body is drawn to.
Remember it's your body, if something doesn't feel right then something isn't right and it's always best to get anything worrying you checked out.
Thanks so much for all these tips! I have started to reduce dairy and gluten so hopefully will see some benefits of that soon! Have been having plenty of turmeric teas too, I’ve heard they are good for inflammation.
Re the diagnosis, I think they have basically diagnosed me already because of the endometrioma.
Worryingly I had an appointment yesterday at my local hospital women’s health department and was told to go on the pill as it will “shrink” the endometriosis including the cyst! 🙈
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