Does anyone have any suggestions for dealing with the psychological effects of endo?

[MasseyF]

Esp when I've got PMS, I find it increasingly difficult to control bouts of tears & feeling helpless, esp with regards to what you can actually do about endo, chocolate cysts, etc; all seems to be out of my control. All seems to leave me feeling a bit desolate & for some reason it knocks my confidence, leaving me feeling quite useless...

[Impatient]

Please speak to yoru GP about depression - it is so common and we endo ladies are really put through the ringer so no suprise that so many of us end up depressed. There is help available and you need to speak to your GP. Book a double appointment so you have time to discuss it in detail and decide on a campaign of treatment.

I have the mirena installed and it stoppped periods and all PMT issues completely, so is certainly worth considering trying that as one option, but it does take time to start to work - 4-6 months, meantime getting anti-depressents which will shut down your emotions will really help you to cope so much better with all the other medical issues you have going on.

And don't be afraid to change medication , there are several ADs around and where one might give you unpleasant side effects another may not, so be willing to try one sort and revisit your GP if you have problems.

They can much such a huge difference in helping you get through this.

They work by shutting off the brains ability to react with emotion, no laughter, but no tears, no delighted happy days and no stressfull or angry ones either. They keep you on an even keel and because your brain is no longer using up so much serotonin in emotional reactions, the levels get a chance to top up again and fill up the serotonin tanks. You need serotonin to fill in the gaps in the brain between thought cells.

When the levels are very low, you will stick with the same few trains tracks of thoughts all the time, like on the main intercity train lines only,whereas the branch lines are closed down through lack of serotonin, with the extra serotonin available your trains of thoughts can have a much bigger network of tracks to use and you feel much better able to cope again. You will still have the same other medical issues, but without being emotionally over reacting to them and sticking on the main train lines only, you abilty to make rational decisions and take back control of every minor issue becomes so much easier.

Pleasehave a word with your GP. It may get worse if not addressed asap. And it is curable, you do not have to suffer with depression, but you do need to speak to someone who can help you.

Your GP will talk it through with you and assess your suitability for medication.

Altering your diet can also help with PMT mood swings and depression, however even though it is quite possible to recover by yourself in the fullness of time (and it may take years) - giving your recovery a boost with anti-depressants is definitly worthy of discussion with your GP. They are so used to handling depression cases, you should get a much quicker resolution than you would for any gynae condition.

Depression and severe PMT do not only make your own existence a miserable one, they really can impact on family friends and colleagues too, treat it as seriously as you would having a gash on your arm. It is a very real illness and there are so many ways you can try to improve your coping mechanisms. Don't suffer needlessly when there are ways to make things better.

[Cooka]

You can try St Johns Wort which is a natural (herbal) anti-depressant reported to have the same actions/benefits as Prozac but without the nasty side effects of the synthetic ones. First speak to your pharmacist as St Johns Wort can clash with certain medications as well as the pill. There are high quality practitioner only brands you can get from naturopaths or pharmacies that have standardised active ingredients.

[Scooteeder]

Hi "MasseyF",

Read your post, and I really can empathize. Endo is a truly AWFUL illness, partly because it genuinely makes you feel so ill, and partly because it is still so misunderstood. This can make a person with Endo feel well and truly isolated.

Please DO NOT ever think yo are alone. And DO NOT ever feel useless, wrong or stupid for finding things difficult to deal with. Personally, I believe that THIS is the most evil part of having a long term/chronic illness. The fact that you feel permanently "stuck" with it; despite trying many remedies, it never really seems to go away. THAT is what I believe makes so many women with Endo feel so utterly miserable - the fact that:

a) they got lumbered with an illness that they did not want, deserve or ask for

b) the illness is long term and unless the try out all sorts of treatments (often with risks and unpleasant side effects) they get little relief

c) the illness is invisible, so many other people either do not believe that a sufferer has it, or has it as severely as they actually do

d) the illness causes pain, fatigue, bloating, cramps, cysts, adhesions, menstrual problems... and a whole list of other nasty symptoms that make you feel awful, and get in the way of living an enjoyable life to the full

Any of this sound familiar? Believe me, I CAN empathise with what you say you experience. I have Endo too. I first got symptoms as far back as 2002. I wasn't referred to a Gynae until 2006, and he then got my diagnosis wrong! He mis-diagnosed Polycystic Ovaries, and THEN didn't even treat me! I suffered on and on until 2010, by which time I was HOPPING MAD and demanded a second opinion. Endo was finally diagnosed and confirmed by laporoscopy in April 2011. I have since had 2 further surgeries, because it persists in returning - and I'm booked in for yet another on 03/03/2014.

You may have guessed - ALL OF THIS has left me feeling PRETTY CRUD!Why? Because I feel I have had to cope alone and unaided. Because I feel I have not been listened to or taken seriously enough by Doctors. Because my body is exhausted, both with fighting Endo, and recovering from surgeries. Because the treatments I have tried have pumped my already "hormonal" body even more full of hormones (the Pill, the Mirena). Because whilst I have been trying to cope with my Endo, I have had to try to keep my life in order - struggle to work, struggle to look after my family, struggle to keep my house tidy, struggle to have a social life. Because Endo robbed me of many things I like doing - pain stopped me going horseriding and to aerobics, whilst fatigue and pain stop me going out to clubs, or hillwalking with my husband.

Things like THESE, I am sure, happen to ALL women with Endo. It is these sorts of things that leave us feeling miserable. Now, I only have my own opinion on things, and I cannot say for definite I am right... but I would be wary of people who "label" you as "depressed" or "not able to cope". Comments like that are NOT helpful - they pathologize you (i.e. make you think you have another illness - depression), when actually the truth is that you are feeling a perfectly NATURAL reaction to a difficult, stressful and overwhelming situation (a body attacked by Endo). When YOU are suffering, it is only natural to feel pain, anger, frustration and worthlessness. These are all signs to tell you something is wrong. They are NOT necessarily "depression". THEY ARE A SIGN YOU NO LONGER FEEL IN CONTROL, AND MAYBE WOULD MUCH PREFER YOUR OLD LIFE BACK (the life before Endo).

This is a LONG reply, I am aware, so I'm going to end here, and go off to look for something... it is an advice list I typed up for myself, and also sent to some other people I knew who had Endo. It's a few hints to try to get life "back on track" - to regain control from the Endo. Before you rush to the G.P. saying you are "depressed", you could try having a look. It will be in my next post to you.

Best wishes,

Elaine.

[Scooteeder]

Hello again...

Scooteeder back, with the second bit of my reply, as promised...

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 say 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. Rehearse what you need to say at any appointment, and take notes. Don't be afraid to ask questions; you should be able to talk openly and honestly with a good G.P. Ask to know all your treatment options, so you can weigh risks and benefits.

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 London 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. Also record any mood swings, again to see if there is a pattern that suggests your Endo may be responsible.

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. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

8. 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.

9. DON'T EVER BLAME YOURSELF for feeling the way you do. You have been on the receiving end of a rotten deal - Endo! IT makes you feel tired, lethargic, "run down" and miserable; not you. YOU are just reacting to the stress and disappointment of having a chronic illness. It may be useful to talk to your G.P. about this (but not about depression, which infers rather that YOU are suffering a mental illness that makes you feel miserable for no reason). Reacting to having a chronic illness is DIFFERENT to being depressed; you are miserable for a reason. It might help to ask your G.P. if there are any support groups for people with long term illness that you could attend; of whether you could see a Therapist who specialises in working with people suffering long term illness. Chronic Pain Services may be useful (to advise on pain management); Psychologists and Counsellors might assist, but only if they specialise in dealing with CHRONIC ILLNESS.

10. REMEMBER ALWAYS THAT YOU HAVE DONE NOTHING TO DESERVE WHAT YOU ARE LIVING WITH. Take time to remind yourself of your SUCCESSES. If you feel low and unhappy, you could try MEDITATION. If this is not for you, then try instead taking time out to reflect on your life. Remind yourself just what you cope with on a daily basis (Endo and its symptoms). THEN remind yourself of all the things you still do and achieve (even little things, or things you think may be insignificant) - working, being a wife/partner, being a mum, studying, raising a family, looking after your home, doing housework, shopping, paying bills, creative interests... ALL the things you still do, DESPITE Endo trying to get in the way. THEN stop and realise that this is pretty AMAZING, really, because there are some people who MIGHT NOT be able to manage doing those things even though THEY DO NOT HAVE ENDO! Remember that, really, YOU ARE DOING PRETTY WELL (especially because you have to cope with Endo in your life). Remember your FRIENDS, FAMILY... REMEMBER YOU ARE LOVED!

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 ([e-mail]), 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 [phone].

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 [phone]. 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.html

4. My contacts: e-mail ([e-mail]), Facebook (facebook.com/elaine.ellis.5...

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

[daffodil in reply to Scooteeder]

Wow -Elaine ,thanks for taking the time to write this. t is spot on and great information for us all. I suffer not only from endo, adhesions and adenomyosis but have long term ME and am on crutches and wheelchair due to Meningitis damage, so do consider myself chronically ill!

One course which I would really recommend is a self management course.I went to one run by MS society and at first was a bit sceptical that it would help( there were folks with all different chronic conditions) it was one of the best and most comforting courses ever. I am in Scotland, but know they have similar courses called "Expert Patients" run by NHS. They look at diet, treatments, managing stress and depression, complementary treatments, diet etc. At the time I was very fed up with my ME/fibro as although it has made me unable to work for 12yrs and made me bed and housebound for much of this time, I felt very misunderstood as I actually look very well !People cant see pain or fatigue. What I relaised was that in many chronic conditions - endo, Me,Ms, arthritis, heart conditions ,diabetes there are very similar issues to cope with. But some illnesses are not given enough research or recognition. Think of the billions put into cancer research( not that this isn't totally appropriate as cancer is a killer) and the very little that goes into ME and endo. We ladies have to empower ourselves to learn what we can about our endo and try to fight for the right treatments. I am in severe pain with my endo but am not allowed any more than tramadol or dihydro - in case I get addicted !My dear friend has cancer and is never denied stronger pain relief.She says herself that it is wrong as my quality of life is worse than hers and she is able to go about her daily life,albeit with the horrid chemo to deal with.

Sorry -what a rant !!

[Scooteeder in reply to daffodil]

Hi Daffodil,

NOT a rant, in the slightest. Don't make yourself feel bad! You are perfectly entitled to the way in which you feel. Each and every one of us is different, and our reactions to illness, traumatic experiences, grief, upset, etc. are all INDIVIDUAL. Who are any of us to say how ANOTHER person SHOULD feel? There is NO SHOULD!

Personally, I think your response is pretty perceptive. Yes, there IS an imbalance in the NHS, with some illnesses getting more recognition, research and treatment than others. I cannot say for definite why this is - I'd suspect a combination of many factors - everything from ignorance about new, or recently discovered illnesses, to prejudice against illnesses where a person does not appear to be blatantly and obviously ILL from the outside!

You see... THAT is, I suppose, the peculiar thing about life. We each get a different "deal", a different set of circumstances. So, not one of us really knows what another person goes through. However, big organisations like the NHS cannot cope with THAT. Oh, no! INDIVIDUALIZED CARE takes time, and costs money! So, "simplifications" are made; judgements and generalizations, that end up affecting the sort of care and treatment that different patients receive (intentionally, or otherwise, the effect is the same).

In a "nutshell"... the more "obviously ill" a person LOOKS, the more they are BELIEVED to be ill. The more resources, funding, research, care and time they get. This is all well and good... for those people who are GENUINELY ILL! However, others get a bit of a rough deal... people who ARE ill, but don't LOOK it! Quite simply, I think Doctors know LESS than they let on. They CANNOT COPE with mystery. If a person does not LOOK ill, they CANNOT BE ill. The person who looks well, but IS ill is a MYSTERY - CONFUSING for the Doctor, who ends up feeling well out of his or her depth! Thus, people like this get "lesser" treatment.

That's my take on it!

Well, I DO hope that you (and everyone on here with Endo) finds some relief from your symptoms. That you all can live lives as fully and as enjoyably as possible.

All the best,

Elaine Ellis ([e-mail]).

P.S. If you ever want to exchange experiences or advice, or would like to keep regularly in touch with "Endo updates", feel free. I'm happy to try and help, or just offer a supportive on-line "listening ear"! If you'd like to pass on your e-mail address to do so, just contact me and let me know.

Take care & best wishes!

[MasseyF]

Thank you all so much for your replies. Just knowing I am not alone feeling like this oddly makes me feel a little better (not that I wish these feelings on anyone else of course).

There's some really useful advice in here that I will do my best to follow.

I am so pleased I found this website; I hadn't realised until now how comforting & helpful contact with ladies who know what you're going through can be. THANK YOU x