Ive waiting for my appointment with my consultant after suspected endo being found on my ultrasound. Meanwhile i've been bumped up with an extra pill (POP) to stop my periods. This has effectively stopped them for the past month and a half, but i am also getting cramps daily now - there manageable but i do find i need a hot water bottle to help. Another problem with I'm having is my moods have been absolutely ridiculous! I mean i will shout at my boyfriend (who's very supportive and has been for 7 years) over not telling me what he wants for tea, and then i will cry over seeing something cute... I'm just all over the place at the moment, and feel no one really understands how hard this is to control.
Im also really struggling with fatigue. I sleep for about 12 hours every night and I'm still tired in the morning. Im a child minder and once I've dropped the kids off i am supposed to be doing uni assignments, but i just can't keep my eyes open, and my brain just empties.
I would just love to know my crazy cramps, mood swings and fatigue are normal. Im taking Bee Pollen and Wellwoman vitamins to try and help but so far they haven't kicked in.
Any help would be great. Sorry about the essay above.
Thanks
Emma xx
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Yes you sound exactly like I was whilst taking norethisterone. Really bad stomach cramps, totally exhausted & crazy moods. I'd start shouting at my family for the smallest thing then have to apologise! Doctor pulled me off it after 6 weeks. Is there any other pills that you could try?
Im so glad im not the only one!! Ive been on a few other pills but i had to stop taking them because of migraines and family medical history. I have an appointment with my Gp on monday, she's been amazing and was the one who referred me as she thought i had Endo. Im hoping she can help, as this is just getting ridiculous now. Thanks x
Hi. Since I have been on treatment for Endo I have daily cramps, bad mood swings and fatigue too. I actually think the treatment has made things worse; the only difference is I do not have a period to contend with. Endo causes fatigue anyway because you body is trying to fight it all the time but my moods and painful cramps have only got this bad since I was diagnosed and put on treatment. I am actually coming off my treatment to see if things improve at all. I am currently on Depo-Provera and was on Zoladex before that. I hope that you find the right treatment for you. X
You're definitely NOT alone in this. It's great to have this Forum to share experiences with other people who have Endo.
I'm an Endo sufferer - diagnosed in 2011, but had symptoms as far back as 2002. I'd also had problems with my periods as a teenager, but that was never investigated or explained. maybe it was Endo all along? Anyway, I do know how much of a nuisance and frustration this illness can be.
Endo can only be confirmed following Laporoscopic surgery - until then a diagnosis can be suspected, but is not definite. It does sound as though your symptoms have something in common with Endo symptoms, and if possible Endo was spotted on an ultrasound, it seems to make sense for you to check out whether this is what you have.
Endo is a difficult disease to diagnose, and to get help for - partly because so little seems to be known about it, and also because there are many myths about it (such as pregnancy "cures" it, or you can't get it following a Hysterectomy - both UNTRUE!). Besides, Endo symptoms can be very similar to symptoms of several other illnesses. This is why it is always a good idea to get yourself checked over by your G.P. and to ask for referral to a Gynaecologist who specialises in Endo.
In the meantime, it is difficult, I do understand. I was "fobbed off" with the Pill for many years (Marvelon, then Dianette). All the Pill does is stop periods - it does not cure or get rid of Endo - it just masks symptoms for a bit. Once you stop the Pill, the symptoms return. Therefore, it is prudent to seek advice as to whether you do have Endo, and what can be done to actually TREAT it. The other reason I suggest this, is because over time, the Pill may cause problems (weight gain, bloating, mood swings, increased Thrombosis risk), and you cannot take it indefinitely.
Mood swings can be caused by the Pill, or they could be a sign of hormonal imbalance. This is yet another reason to discuss your problems and your symptoms with a Doctor. There are some suggestions of a link between a hormone imbalance called "Oestrogen Dominance" and having Endo (and other Gynae problems).
I'm going to send you another reply, as well as this one, in which I'll give you a list of the things that I do to try to manage and cope with my Endo. I do not expect you to feel obliged to act on any of my suggestions - they are just suggestions, and what works for me may not for you. Endo and how to cope with it is different for each and every woman. Perhaps you could just read through it, and if you feel there is something you might like to try, give it a go. The decision is yours. YOU are the person who needs to be in charge of deciding what is the best way of managing your symptoms.
So, I'm off to get the list...
Meantime, take care of yourself,
Elaine Ellis.
P.S. A couple of links to information about Endo symptoms, and about Oestrogen Dominance...
Here's the other reply I promised, for what it's worth. Take from it anything you think may help, and discard the rest...
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.
Wow Elaine! Thank you so much for your detailed replies, its so nice knowing how caring people can be!! I have an appointment booked for monday to try and get this sorted as i understand this is just masking my symptoms now and just cant wait until april to get it sorted. Will have a good thorough read of everything you've wrote. Thank you again! x
I'm also struggling with complete exhaustion which as a result is lowering my mood. My endo is affecting every day of my life now and I have completely stopped doing any exercise. I get frustrated when it stops me from doing things that I really enjoy. At the moment I can only manage to go to work and then come home too drained to do anything.
I'm not able to go onto the pill as I have a history of migraines linked to the pill and we are also trying for a baby. My husband is trying to be very understanding and says that is ok for me to feel tired, but I feel completely useless that I am exhausted after a day at work and can't even manage to take the dogs for a walk.
How do other people cope with being tired all the time?
Hi Penguin2, I really struggle with being tired, i haven't really got anything to help. Im surviving off Bee Pollen tablets, vitamins and lots of Red Bull! Sorry not to be of any help!
I also have terrible fatigue. The week during and after my period is just dreadful. But I struggle staying awake and finding the energy to do things, all the time.
Have you had your blood checked? Things like iron. B12 and folate deficiency can all cause fatigue.
My iron levels are within the normal range (I take iron tablets) but I am having my B12 and folate tested.
The doctor did say about 4 years ago that i needed a blood test as they think I'm anaemic. I never got the blood test done though as I'm petrified of needles, but i did try taking iron supplements before and found they helped. Hoping the course of vitamins I'm on will soon help, but just hating these dreadful cramps every day!
Just a thought... fatigue and tiredness are a complete nuisance, and NOT easy to deal with. Endo can cause fatigue in its own right. Still, I do have a couple of things people could try...
1. Some brilliant advice given to me by the M.E. and Fibromyalgia Society (these diseases also cause fatigue/tiredness). They recommend something called "pacing". Basically, you time how long it takes you to do a certain activity before you get tired. This is the amount of energy you have to spend on that activity before you need a rest. Then what you do is break down activities into smaller tasks that you can achieve and complete in the time you have before you get tired. Take rests (rest for as long as you feel necessary) and resume the activity, taking further breaks - as many as are needed before you have fully completed the task. You may have to accept that it takes longer to do things, but at least you are not tired and "burned out" doing them.
2. Tiredness and fatigue can be a sign of a depleted immune system, so helping it along with supplements may assist. A healthy diet, and vitamin supplements if you need them could help. Also, Echinacea and Ginger are good natural immune boosters, as is Chamomile. Garlic, too, can help. Maybe this is why the Endometriosis Diet suggests cutting out processed foods and replacing them with healthy fresh fruit and veg? Perhaos the Endo Diet may work for some of you?
3. The other thing to remember with fatigue and tiredness is that stress/anxiety, and mood swings can affect it. Many people with illnesses such as Endo can make themselves feel guilty or worthless for being ill. Remember, IT IS NOT YOUR FAULT. You do not need to feel guilty for wanting to take care of yourself. Rather than "beating yourself up", make some special "me time" to relax, unwind and do things that you really enjoy, and make you feel good.
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x
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