I was diagnosed with endo in 2004 and have done lots of research over the years. However, until today I've never discovered the RCOG Green Top Guidelines on the treatment of endometriosis. Here is the link:
I urge every endo sufferer to read this extremely carefully and to save it for future reference. This document outlines the gold standard methods for surgical and medical treatment of endo, using info from studies to back it all up.
It's a fascinating read, especially since many GPs and gynaes have told me things in the past which directly conflict the information held here.
Here are some of the things that struck me whilst reading it:
- Surgery should not be carried out within 3 months of hormonal treatment to avoid under-diagnosis: I've been on some form of hormone treatment during every lap and even had one clear lap (which was when I was on the strongest hormonal treatment). I even questioned a gynae on this once and he said it wouldn't make much difference
- There is inconclusive evidence as to whether anti-inflammatories improve endo pain: I had one doctor tell me my pain couldn't be endo because voltarol didn't help it!
- Zoladex etc alone does not improve your chances of conceiving: if you're found to have endo and it's affecting your fertility, a course of hormonal treatment won't improve your chance of conceiving naturally. However, it can improve your chances of conceiving with IVF and surgery to remove endo will increase your chances of becoming pregnant.
This is fascinating stuff and is real ammunition for endo sufferers - we should all be very familiar with the content of this document, mainly because too many GPs and gynaes are not.
This could help us all to get more effective treatment - I hope you all read it an that it helps you.
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cupcakegirl
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It's scary not only how little they know, but how frequently they recommend the opposite of what they should, putting our future health and fertility at risk.
Being very informed has done me so many favours with my treatment - its sad that we have to do this, but so many doctors just don't know enough about this illness. I understand that GPs can't have a thorough knowledge of every illness, but I'm sure they know more about diabetes etc even though more people suffer from endo. As for gynaes, endo is the second most common gynae illness after fibroids - they have no excuse for not being fully clued up as they must see endo patients every single day.
I hope this helps someone to avoid the wrong treatment and get the best care.
Wow; this worries me a little; i have also been given medication to induce a false menopause and my laparoscopy is booked in for teh 14th february
as it is the medication os horrid stuff and makes me feel alot worse and comes with some horrible side effects; maybe i need to see my GP about stopping taking it.
I wouldn't worry too much - so many laps are done after courses of things like zoladex. The side effects aren't nice but it can be extremely effective at improving endo in lots of ladies. Hopefully the treatment and the lap will really help you
There's nothing in that article to suggest normal ovarian function will not return after GnRH therapy, I don't want everyone to start panicking when they read the above post!!
The document just says it may make matters worse due to "adverse effects and loss of time trying to conceive" (something along those lines).
Having said that, there is a risk after any treatment that puts you into a menopausal state, that normal ovulation will not restart after treatment - if I remember back to when I was on zoladex, this is even listed amongst the risks in the patient info leaflet. Of course, if you're on a 6 month course this is extremely, extremely unlikely - having been on a much longer course, there's definitely something wrong with my hormones years after finishing it and I'm waiting to see an endocrinologist to find out what's happening.
Essentially, I wouldn't be too concerned about zoladex putting you permanently into menopause if you're prescribed a 6 month course as the risk is small, but worth considering. AstraZeneca, who make zoladex, say:
"As with other hormonal interventions that disrupt the pituitary-gonadal axis, some patients may have delayed return to menses. The rare patient, however, may experience persistent amenorrhea [see Drug Interactions (7.1) and Clinical Studies (14.3) and (14.4)]."
I agree - its shocking that it hasn't been updated in so long, although perhaps the lack of funding into endo research means very little has been learnt since then which is a depressing thought. I took this directly from the RCOG site so it appears to be the most up to date version. Still, it's more current than the nonsense many GPs and gynaes spout so it's still worth familiarising yourself with the content.
I agree with cupcakegirl, its better than nothing! If only all the gynaes knew all these in the document (or even half)! Even some gynaes that they say they know about endo, they are full of s**t (excuse my language). I've been there, when my first gynae was talking nonsense and I'm glad I changed him, before he did more damage to me.
I have seen 2 excellent, top endo gynaes (one in London, one in Greece) and they both agreed how rubbish was the approach of my first gynae. The document says more or less what both good endo gynaes are saying now (2013).
All the basic are covered in this document and to tell the truth I never understood why to have zoladex or similar things just before operation. Sometimes endo is so microscopic that it barely can be shown with laparoscopy. If it shrinks even more it might not be visible at all for a while, but it can still come back. x
I think it's so important that we have a basic understanding if what works and what doesn't when it comes to treatment - when I had my diagnostic lap, I returned to the follow up having done my research. The gynae said he wanted to operate again and I said I didn't want more surgery so soon due to the risk of adhesions - he actually said "well if you don't want me to cure you, you'll just have to have depo provera" (when I asked about side effects, he said there weren't any except for the "miserable women who complain about having bigger breasts"). Fortunately I knew enough to run to a specialist as fast as I could.
I was under one of the best specialists in the country but even he did a lap when I hadn't had a period for 9 months because of the depo. Guess what? He didn't find any endo. Of course, my periods came back a month later and when I convinced him to do a lap several months later the endo was back with a vengeance. He told me he was surprised that the depo had had such an effect - I wish I'd read this before now as having that op was a waste of time really!
That's not to say its always wrong to have hormonal treatment before an op and you have to trust your doctors to some extent - but when they tell you things that are evidently incorrect, it's definitely time to think about getting a second opinion!
Well said cupcakegirl, just went through the document again and the last lines at the very end of the document (after ref etc) says it was reviewed in 2010. And a new one would come out in 2012 or so.
So there you go, I believe its quite up to date! x
Yellowrose, I don't think your statement was misleading or that you were trying to mislead anyone. I think the concern was that, if taken out of context by someone who doesn't know much about gnrh treatment, they might think that this is a common side effect of the treatment.
In reality, we don't actually know how common it is - the manufacturer describes at as "rare cases" but I've yet to see any actual figures. On a circumstantial basis, I do know lots of women who have been on 3-6 month courses of zoladex and similar without any ongoing problems, and the same for some women who are on longer courses. I also know some women, like myself, do have some degree of hormonal imbalance long after stopping treatment. That's why I posted the additional info above, just to clarify what you said for anyone who might be concerned
Also, although the actual document doesn't refer to non-return of ovarian function, I believe this is included in the "adverse effects" mentioned. It would probably be more helpful if they specified what precisely they mean by adverse effects, but you are completely correct that this is a known issue, even if the frequency is not known.
Yellowrose, I don't think your statement was misleading or that you were trying to mislead anyone. I think the concern was that, if taken out of context by someone who doesn't know much about gnrh treatment, they might think that this is a common side effect of the treatment.
In reality, we don't actually know how common it is - the manufacturer describes at as "rare cases" but I've yet to see any actual figures. On a circumstantial basis, I do know lots of women who have been on 3-6 month courses of zoladex and similar without any ongoing problems, and the same for some women who are on longer courses. I also know some women, like myself, do have some degree of hormonal imbalance long after stopping treatment. That's why I posted the additional info above, just to clarify what you said for anyone who might be concerned
That document does include some very useful information, but it's an overview. Endometriosis does not conform to a certain set of rules. If it did, we'd all be treated the same, and we'd all respond in the same way to every treatment. And the fact is that we don't.
This disease is still an enigma, the medical profession are still learning new things about it. Things that were pronounced as gospel 20 years ago have now been proved to be wrong, and so it will continue until they crack it.
It is only an overview and not everyone responds to treatment in the same way, but it's guidelines for treatment based on studies which show that, in the majority of cases, this is how gynaes should be treating endo patients. It dispels many of the myths surrounding treatment and, based on scientific evidence, gives a best course of action in various circumstances.
Of course we don't know why or how endo develops or have a cure, or even a definitive way of treating every patient. However, these guidelines do exist and it's evident from my own experiences that many gynaes are unfamiliar with them, despite them originally being published almost 7 years ago.
I didn't post it because it contains all the answers for every patient - I posted it because familiarising yourself with it could prevent you from agreeing to unsuitable treatment, or alerting you to the fact that your gynae is not very informed about your disease. Given the prevalence of endometriosis in this country, all gynaes should be extremely knowledgeable about the disease, but sadly thats not the case, so we have to inform ourselves.
I suppose I am extremely lucky in that I have had 2 gynaes over the past 20 years who have been nothing less than brilliant when it comes to endo.
But for me anyway part of their brilliance has been the fact that they have treated MY endometriosis and not stuck to the 'rules' that govern the disease as a whole based on results of trials that haven't involved me or my endometriosis. Because of that, I have been able to trust them implicitly to know what's best for me at any given time, but I have also been able to accept that they cannot perform miracles.
My point was that endo is not a one size fits all disease, and that some women will not fit in with the results of the trials. If a doctor refuses a treatment or offers what may be considered an 'unsuitable' treatment, it might not be because they are not au fait with the latest endometriosis standards; it might just be because they are doing the best thing for their patient at that particular time. I know that there are shocking gaps in knowledge within the medical profession at a very basic level which obviously need to be addressed, but starting from a position that assumes that all gynaecologists are useless when it comes to endometriosis doesn't seem very fair to me, and isn't likely to harvest a good doctor/patient relationship!
I'm all for people educating themselves about their disease, it's almost irresponsible not to. And of course, everybody wants to know that they are getting the best treatment, and ideally every health authority would offer gold standard endometriosis treatment. But on the other hand, we do live in a blame/entitlement culture these days, and when I see that women are 'demanding' this or that for a disease that just doesn't play by those rules it seems to me that the doctors can't win, however proficient they may be.
Anyway. Anything that helps people educate themselves is a good thing, as long as they keep in mind that even the 'best' treatment won't always yield the best results.
You are right - you are extremely, unbelievably lucky to have had two gynaes and has both be knowledgable and trustworthy. For the vast majority of women, this is most definitely not the case - even if they end up with a specialist or a general gynae who knows their stuff, most will have to go through one or more gynaes that doesn't understand the disease, fobs them off or gives them inappropriate treatment. If you've never been in that situation, you are a rare case - and I'm not just saying that from my own experience, but from spending many years researching the disease and using endo boards like this one. I'm not suggesting that all gynaes are useless, but the reality is that too many gynaecologists have little to no accurate knowledge of how to treat this disease - I've had multiple gynaecologists admit to me that they don't know much about it, and multiple gynaes who have treated me incorrectly. I'm not alone in this - that's one of the reasons why the average time from the start of symptoms to diagnosis is 9 years. If all gynaes were familiar with the myriad symptoms and the RCOG care standards, this would be dramatically reduced.
Besides, there is an obvious difference between a consultant who knows the disease well and decides to pursue another course of treatment on the basis of that expertise, and a clueless doctor that gives inappropriate or unsuitable treatment because they don't have a basic working knowledge of the condition. I have seen both kinds, and it's instantly obvious whether a treatment is being suggested because of lack of knowledge of the guidelines or because they genuinely understand what might help me. I'm not saying all doctors are clueless and that patients shouldn't trust their opinion, but that understanding the disease and guidelines yourself should enable you to either trust your gynae or recognise when they are not as experienced or knowledgeable as they should be. If a gynae says "the usual treatment would be x but I don't think this would help you because of y, so instead I want to try z", you know they know their stuff. Doctors absolutely can win - provided they have a good knowledge of the conditions that we pay them exorbitant amounts to treat. It's their job to know what they're doing and far too many don't.
Of course none of them can work miracles or cure an incurable disease but this disease can be treated well or treated poorly. The consequences of poor treatment can be dire. When I've seen specialists, I haven't expected them to treat me by the book - I've expected them to treat my case individually but they can only do that if they fully understand the cause and effect of all treatments and how the disease generally responds. If certain treatments don't work, they can use that knowledge to establish the next treatment and so on.
Yes, ideally every authority would provide gold standard treatment and actually there's no excuse for this not to be the case - this s a debilitating disease and delayed diagnosis in treatment can cause irreversible damage and problems. The guideline treatments are not complex - it just requires doctors to be educated.
I don't believe that any woman is wrong to demand the best possible treatment, and it has nothing to do with a blame or entitlement culture. I spent almost 10 years being ignored, misdiagnosed and going through a rushed diagnostic lap that left me with no diagnosis and nerve damage that is untreatable and irreversible. I am in excruciating pain every day of my life and it's not going anywhere. I do blame the doctors who were poorly informed and I was entitled to better care than I received.
Every patient is entitled to research their illness and make decisions about what happens to their bodies - ideally these decisions would be made on the advice of knowledgeable and well-trained consultants but too often we do not have access to them.
I think it's fantastic that you've had such exemplary treatment, but it seems a little harsh to label the women who haven't as demanding when all they want is a similar standard of care to that which you've received.
Hi, it's exactly what cupcakegirl says below. I didn't mean to sound nasty or accuse you of anything, I was just concerned that someone totally new to this might read what you said and take it the wrong way. Sorry!
Chrissie66 this document is a general guideline, and believe me there are doctors that they dont know even half of what its written there. It is really nice that cupcakegirl posted that!
And its not science to understand that OF COURSE every woman will need a variation in treatments, medical approach, etc. But when doctors know the basic makes a huge difference at least on how many years some women can waste just because doctors didnt know anything about endo. xx
That's so annoying, it happens to me all the time.
I just wanted to make sure you knew I wasn't trying to attack you earlier - its impossible to convey tone when writing online and I tend to be a bit overly formal which is often mistaken for aggression! I do understand your point about not tarring all doctors with the same brush as its not helpful - it certainly wasn't what I was trying to do.
As you say, all info is good when it comes to coping with any illness and hopefully this will help a few people
I've just scan read the document. I am in agreement that the more information we have at our disposal the better!
I have had some guidance from 'dubious' gynaes and am now very fortunate to be recieving my treatment from a leading expert in Endometriosis. I have stage 4 severe endo with a completely frozen pelvis and would not expect to be recieving the same treatment as a woman with mild or moderate endo. I want to recieve the best possible treatment for MY endo not what the 'Haynes Manual of Endometriosis' says I should!
It is important that we, as patients, have as much information stored away in our brains/notebooks/scraps of paper/internet browsing history etc as possible but that we do not close our minds to what our gynaecologists advise and suggest. We have the right to question their suggestions, and I would advise EVERYBODY to question them as much as possible in order to gain peace of mind and to understand the aims and objectives of any course of treatment.
In terms of 'wasting time waiting for diagnosis', Endo is a bitch to say the least and the symptoms cross over with other gynaecological conditions and so can remain 'hidden' for years. The only sure method of diagnosis is still through a lapraoscopy, and justifiably the NHS is not going to fund a lapraoscopy for every woman who suspects she may have endometriosis. I was originally diagnosed with PCOS at the age of 17, it was not until I was 23 that I was officially diagnosed with endo. It's incredibly hard to come to the realisation that my 'prognosis' would have been different with earlier diagnosis, but unfortunately endo is not that easy.
I agree that it's very difficult to diagnose endo and the nhs can't give everyone presenting with symptoms a lap. However, it wouldn't be so bad if they took the symptoms seriously and at least started to investigate the problem, or monitor the patient over time but many don't. When you have women who are with the same gp for 5+ years and constantly present with symptoms yet they still aren't referred to a gynae, there is something seriously wrong with the system. I have actually seen an old PTC doc which states that, if a women presents with heavy periods, severe pain stc they should be sent for a scan. If that is clear, they should be referred for counselling. Can you imagine anything more ridiculous? I was hospitalised so many times before my diagnosis and I've seen in my notes where a junior gynae has written that the possible causes are a cyst or psychosomatic pain - no consideration of endo at all. It's frankly unbelievable that this is still happening when it doesn't need to.
I totally agree that not everyone should be treated by the book and we shouldn't be closed minded to the suggestions of gynaes. However, as I said above, there's a difference between a knowledgeable gynae suggesting an unusual course f action based on their expertise and a gynae who is clueless suggesting something inappropriate, unnecessary or counter-productive. I've certainly always been able to spot the difference. I think you're right in that asking as many questions as you need to is the way to tell which your gynae is when their suggestions differ from the standard.
I always want a gynae to assess my personal case and take action on that basis rather than blindly following the guidelines - but every gynae needs to know the guidelines backwards so they know when it's appropriate to follow them, and have the expertise to know when it's time to go a different way.
I'm seeing my gp on Thursday - he admits he knows very little about endo. I'm going to take a few copies of this document with me for him and his colleagues and hopefully it will help another endo patient at the surgery in the future (and hopefully he won't take offence and boot me out!).
You're a braver woman than I! but if a job's worth doing etc - you might also want to have a look at this link that Miwa provided a couple of weeks back - endometriosis-uk.healthunlo... or alternatively just put commissioning board e10a into Google .
I have started reading all this with great interest as I also had to 'educate' or remind my GP and specialists of current procedures and research.
I am perhaps being a little unfair comparing to you as I do have a very rare form of Endo on my lungs, so obviously information and research will be very thin on the ground!
I think it is a really responsible and pro active form of behaviour to take info you have found relating to your medical condition and then presenting it to the GP and/or specialist.
I personally view my medical care as a two way transaction. I recognise that my specialist will not always have time to keep up to date with current research related to my condition due to the workload of everyday clinical life etc and the rarity of Catamenial Pneumothorax (CPT).
So, between he and I we agreed that if I discover anything relevant, he will make time to read it and apply any new measures only if agreed by the both of us or me alone. Nothing is ever done simply because my specialist says so.
From day one of meeting my specialist he was very honest and warned me that due to rarity of my case the research out there is also just as rare! It was then I put forward my attitude that this should be a team approach, not a paternalistic one. I think by being forthright and armed with my own facts from the outset created a benchmark of how I expected to be treated.... Like a woman, not a little girl!
So far so good. All of my decisions to date have been respected, and advice from both parties has always been listened to, discussed and then decisions taken forwards in a respectable manner.
Do let us know how your GP surgery reacts to you taking this info to them.
I did a similar thing at my surgery and it went down well. I also gave my boss (I run a mansion and look after the family that reside there) info too and the family I work for are great about everything. Even the 12 year old has no qualms about asking me (very!) frank questions at times which I always try to answer honestly and sensitively.
Good luck and I am so pleased there are others out there akin to my own attitudes!
I'm sorry you have endo on your lungs - I've been participating in online forums for 9 years and I've only ever spoken to one other lady with lung problems (pneumothorax, pleurisy etv) as a result of endo so I know it is incredibly rare. It's fantastic that your consultant understands that you are perfectly capable of researching your condition and taking your opinions on board - how I wish all doctors felt the same!
Unfortunately my GP appointment was disastrous and I left without giving him the information - he was extremely rude, ignorant and obstructive throughout the appointment and frankly I didn't want to waste my energy. I'm planning to find a new practice as soon as possible, and hope I can find a doctor who understands that I know an awful lot about this condition after doing my own research for almost a decade and it's highly likely that I have more information about it than they do. Unfortunately most doctors seem to feel threatened by patients who arm themselves with information and are incredibly dismissive of information sourced online, as though it's all hearsay and doesn't include medical studies and legitimate research.
It's brilliant that your employers and your doctors treat you with such respect - I hope I'll find doctors that treat me the same soon
Gosh! I am truly sorry and saddened to hear about what happened to you at the GP clinic. I personally am shocked to hear about this sort of attitude.
I do wonder sometimes if flagging situations like this to the BBC (Woman's Hour maybe) would raise awareness of such archaic treatment of patients and maybe make those first steps toward addressing the problem....just an idea! I may look into it.
I do not know if you realise this but you do not have to undertake specialist care in the county you reside. As far as I know I think GP allocation is still postcode orientated but specialist care is not.
I go to Nottingham for the Thoracic aspects of my condition and I see a specialist based at Derby for the Gynaecological side of things. I am based in Warwickshire and have no qualms about travelling to see the best in those fields. I have done this for nearly 5 years now.
I really hope you find a decent GP as they are ultimately there to give good patient care!
I too am a CPT patient. Over the past 15 to 20 years, I have had a range of treatments from pleuriodisis to chest tubes. I am here in the USA and started out with physicians who barely knew of the condition. If possible, I would be interested to know how you are doing and ultimately which treatment worked the best for you to give you back your quality of life dispite the condition.
I don't know if you'll see this but I've been struggling with endometriosis like symptoms for years but had 5 years respite on depo provera. During that time I had a severe unexplained bought of pleurisy and the pain has never really stopped just lessened. I've since stopped depo to try for a baby but I'm getting increased pleurutic symptoms, pain and now bubbling in the out breath. I'm so scared that it is bad out that it's in my head and I just don't trust the GPs that I've seen for 14 years without diagnosis. I had diagnostic laparoscopy and was told everything was fine 6 years ago could they have been wrong?
I don't think your story is irrelevant at all - its a perfect example of the treatment that some women receive from their GPs, particularly a select group of older male doctors (although I've had a few older male gps who have been amazing too so you can't tell!).
One guy I saw was so misinformed and incompetent that his actions put me in the hospital twice - once when he refused to prescribe th painkillers I'd been taking for years, and once when he overlooked a dangerously infected gallbladder which made me very ill. He told me to buy some Rennies and go back to work. The nerve! Certain doctors of any age and gender seem to have forgotten that patients are real people with lives outside of the appointments. When coupled with a lack of knowledge and outdated beliefs (I've had doctors tell me that periods are supposed to really hurt - they're not; that endo is sexually transmitted - obviously it's not; that pregnancy is a cure and that pelvic pain is a psychological disorder caused by childhood abuse), women get seriously let down.
I hope you complained about that gp - I don't think it will be long before we start seeing malpractice suits being brought my infertile endo sufferers who had unnecessarily delayed diagnoses. The delays can allow endo to do serious damage in terms of fertility and in general, and I genuinely believe that some doctors are negligent when it comes to ignoring symptoms in some cases. I'm not for a second saying people should take legal action in these cases, but I'll bet it will start to become more common.
As for IVF, I personally agree that all infertile women should be given at least or IVF cycle on the NHS. However, due to the state of the NHS budget, many disagree. What I definitely think should be done - for endo and for all conditions, is that NHS treatment should be standardised across the country. I realise that this is difficult as some areas have higher rates of certain conditions than others and vice versa, which is why budgets shouldn't be localised as it is now. Either everyone should qualify or no-one should - I wouldn't agree with the latter but I would at least understand it. Where I live, you have to be precisely 35 to get an NHS funded cycle - I'm sure this saves the local authority a serious amount of cash, but they're ignoring the real cost.
Sorry - enough ranting from me As much as I complain about the nhs, I'm actually incredibly grateful to live in a country with state funded healthcare. I just know how much better it could be - not even by increasing funding, but by ensuring that all medical staff are up to date with their knowledge of all medical conditions.
I have suffered from dysmenorrhea since I was a teenager . I am 51 and have had a partial hysterectomy. This was done when I was 33.
I cannot thank you enough for pointing out this article. As a sufferer , and a nurse I feel so relieved and better equipped to face my GP .
I feel as though I'm seen as a problem not a woman WITH a problem.
I hurt my back at work around 10 years ago and between seeing the pain clinic for this issue and then add the endometriosis I can see the look on the face of my GP as I walk through the door.
Reading some of your experiences has been heart breaking , please know I feel heart sorry for you all. Thank you .
Spitfire the document cupcakegirl posted a link to - is informative - but better than that is the ore recent (October last year ) NHS guidelines for endo care.
Hi everyone, wow thats alot of info! I have my first lap booked in for the 22nd of april and i stopped taking microgynon last week as i was advised to come off pill 4 weeks before op...does this mean my endo could be under-diagnosed? x
I'm sure it's an awful lot to take in when you're new to it all, but very helpful. There's a more recent NHS link a couple of comments up too.
Technically the answer is yes - anything that suppresses your cycle and stops you from bleeding could make your endo harder to visualise. I wouldn't worry too much about this though - the pill is unlikely to shrink your endo compared to other stronger hormonal treatments, and most sufferers still have visible disease to some degree to allow diagnosis. Having said that, if your endo is very hard to visualise (being clear or microscopic) laps can be "clear" when disease is present because the surgeon can't see it or doesn't recognise it (this is what led to my first lap being "clear" - that and the fact they only spent five mins and didn't look properly). I have endo that's very hard to see (it's clear and orange and looks like blisters rather than being dark red/black) but I've only ever had one lap where I was on nothing - they found more disease during that lap, but it was still visible in the other four.
So basically, it probably wont be an issue for you - the pill isn't all that strong, and if you have endo it's most likely you'll still have visible disease to enable diagnosis. It just me not be as widespread as it would appear it you had been off it longer. This is more of an issue in a treatment lap as it means they might not get it all, it's very unlikely it would prevent diagnosis. Having said all that, if your lap does come back clear, come back and get some advice.
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