Endometriosis UK


Hi i cant even describe the different ways endo has chanched my life i dont go to the doctors anymore ive just learned to live with this awfull condition it 1st started one day when i had a period so heavy i started coughing up loads of blood i wasnt really concerened because i somehow knew from the pains i had and my breathing that all the blood from my period has basically gone on my lungs every month i struggle with my breathing because im sure it sits on my lungs also i cant even start to describe how it has affected my bowel i know that when you have endrometriosis that it goes tio other organs in your body does any one else have terrible bowel problems because i cant describe what happens every moth im too embarrased plz share your symptoms because i feel very alone wuith this and very down with it all it got so much worse when i had an emergency ceserian does anyone else share the same because i think the doctors think im a nut case

6 Replies

My dear, I feel your pain. I've also got endo on my bowels and I have terrible bowel problems. First of all I think you should try to overcome your embarrassment. There's nothing to be ashamed of. You didn't ask for this terrible disease and the best thing you can do for yourself is to get help ASAP especially regarding the possible endo in your lungs. Because we look normal on the outside and have varied symptoms, we are sometimes accused of being nutters. I'm sure most of the ladies who use this forum will tell you the same. Please please please keep going back to the doctors and insisting and pushing until they take you seriously and do something about your symptoms. Change doctors if you have to but please don't give up. I wish you all the best. We are all here to support you.


Endo in the lungs is the most common place outside of the pelvic cavity so no you are not a nut case! I had bowel surgery with my hysterectomy (but it still came back) and lots of the ladies here know all about bowel symptoms,so you are not alone.

My advice would be change your Gp and ask for a referral to a specialist Endo centre.


Oh, Bexxy...

I really DO feel for you. This is no way to be living your life. It's just awful that you fear your Doctors thinking you are a "nut case". I doubt very much that you are... what's probably much more likely is that you feel overwhelmed, stressed, frightened, worried, and utterly worn out by a whole host of unpleasant symptoms that are clearly making you feel really ill.

Endometriosis is a peculiar illness. It seems to vary in its symptoms from woman to women, leading to very individual and personal Endo experiences. This is probably one of the reasons why it seems to be so little understood, and takes so long to diagnose. Like other readers on here have said, women who have Endo get to know their own symptoms, as they are familiar with their own bodies. Most (if not all) of the women on this Forum have Endo, or suspect they have Endo. Many have been through similar experiences.

Endo sure can affect your bowel - I know all about that one. Sadly, the symptoms may seem so similar to those of other illnesses, that Doctors often do not know where to start. It can be very frustrating to spend your time listening to different Doctors telling you that they think your symptoms are this, that, and the other - yet to be no nearer to really understanding what is causing them! Women (myself included) can end up feeling like they are "going nuts" or "making a fuss over nothing" when they live daily with symptoms that other people do not recognise, do not understand, or cannot easily attribute to any known cause.

Endo can also affect the lungs and the pleural cavity (space inside the chest). This is not common, but it is definitely not unheard-of. Where Endo does appear in or around the lungs, it is most often on the RIGHT SIDE of the chest. It can cause sharp, stabbing pains and shortness of breath. Symptoms may be worst around the time of your periods. Endo in this area is known as THORACIC ENDOMETRIOSIS SYNDROME. Patients may cough up blood (as you say you do), which is called HEMOPTYSIS. They may also experience the collapse of an affected lung (up to 72 hours after menstruation), called HEMOPNEUMOTHORAX.

The only thing I can really suggest is to ask you please not to "suffer in silence". There is no reason whatsoever for you to feel embarrassed or ashamed of discussing your symptoms. Only when you are able to do so, will you be able to receive the treatment you so clearly need and deserve.

I have Endo, and I'm no longer fussed at all about discussing symptoms - in the end, it's the only way of being able to recognise what is wrong. Yes, talking about things like heavy periods, painful sex, nausea, constipation or diarrhoea can be unpleasant; but the truth is that many women with Endo (me included!) suffer from them. A Doctor should not leave you feeling embarrassed to talk to him or her about personal symptoms. Doctors are supposed to be sensitive, tactful and caring. I would suggest that if you have a Doctor who makes you feel ashamed, embarrassed or humiliated - YOU HAVE A BAD DOCTOR. Time, maybe, for a change?

Keeping a DIARY of your symptoms can be a real help. It assists you and your Doctor to spot patterns in your illness. It also means that you are less likely to forget things at appointments, when you may feel anxious, or pressed for time.

I am going to send you another reply, with a list of things that you could try to help you manage your health problems. Some may work for you, some may not - it is up to you to decide what is for the best. But, please do not ever be embarrassed, or ashamed to ask for help - that is what the health care system is supposed to be there for. No woman should have to "go it alone"!

Do think carefully about things, and about what support you actually need. Do take care of yourself. There is, after all, only ONE YOU... and I am pretty certain she would be sorely missed by loved ones should she fail to look after herself. You owe it not only to your family and friends, but also to yourself, to take care of yourself in the best way you can. Don't be embarrassed - be pro-active!

Best wishes,

Elaine Ellis.

P.S. You might like to read the following...

1. Catamenial Pneumothorax (lung problems related to menstruation) -


2. Endometriosis symptoms according to where found -



Hi again,

Here's the other reply I promised, for what it's worth. I'm sending it you you along with a huge "e-hug" in the hope of offering some comfort...

Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.

2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists plus your area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings too, and see if these coincide with your periods, or whether it is perhaps medication that causes them.

6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. If you are studying, Universities and colleges often have Student Support departments where students with personal health problems can get advice and assistance (some even have Disability Advisers). Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

8. If pain, and pain medication are problematic to you, you could ask your G.P. for a referral to a Pain Management Centre/Clinic. These services are usually multidisciplinary teams including Psychologists, Pharmacists, Occupational Therapists, Physiotherapists... and they are designed to meet the needs of people who suffer from long term pain.

9. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort can be a good natural aid to help with mood swings. Echinacea is useful to boost a flagging immune system.

Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.

Take care,

Elaine Ellis.

P.S. Just a few useful contacts:

1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.

2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

3. Endometriosis diet - endo-resolved.com/diet....

4. About Chronic pain management Services - nhs.uk/Livewell/Pain/Pa...

5. How to find an Endometriosis Specialist - bsge.org.uk/ec-BSGE-acc...

HOPE some of this helps you. Best wishes and good luck!

(Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!


I've suffered for 28years and still in agony! This is made worse by depression and the fact that I can't have children, which is devastating!! I also have it on my bowel, bladder, urethra, pelic wall, uterus and one remaining ovary. I've heard of it on the lungs and nose etc? Is it painful when you cough? What medication are you on? I find oxynorm 20mg a day , 5mg every 4 to 5 hours but have to take an extra one at night when pain unbearable. I also use lidocaine patches, naproxen, paracetamol and nortriptylene to help me sleep. The pain is exhausting without any pain killers. Do you find it difficult to get up in the morning because the pain is so bad. I also find the debilitating pain frustrating and depressing ! So every day is a battle, I was bullied for 6 years by my Headteacher due to occasional time off when I literally was so bad I couldn't drive or move with the pain. He didn't take into consideration the extras I did as a Drama teacher or the time I struggled in to teach in agony! So now I am a supply teacher with very little work as I need notice the day before to get my meds ready and time to 'come to ' in the morning.' The last time I worked was May. Keep in touch it's reassuring to know I'm not the only one fighting Depression and Endo!


Hello Bexxy 123,

I am so sorry, but please, please don't give up or settle for anything less than your comfort. As most of the ladies have stated, we all have gone through that tough period of doctors thinking "we're nuts". But it's mostly because they may not be familiar with this condition, as it can be varied and rare. I am an example of one who had to push and push, self diagnose and research,to get the docs to believe me. Turns out my endo had traveled up to my lung and caused several collapsed lung episodes....monthly.. Suffered through two thorocotomy surgeries, to basically re-enforce then later remove the lining around my lung, so that the endo tissue could no longer attach it self or adhere to the lung. At this point,please push for at least a chest x-ray and then look for help from several types of physicians. It took a collabretive effort from a thoracic surgeon, a gyn, and my general practicioner, to finally get it all figured out..


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