Since seeing consultant Friday and having internal scan, my partners attitude has changed from caring and sympathetic to disbelieving

[angiechick78]

Because the consultant said he couldn't see anything significant to indicate endo it's as if my partner no longer believes me. Has anyone else had this happen and how did you deal with it? Feel totally alone and even more like he thinks it's in my head (which it most certainly isn't) what can I do?

[Gemx85x]

Ye I have had this happen to me in the past coz it's not visual they think it's not real I've even had so called friends say to me when am really bad "it's just a period why you moaning" so let's just say I've cut her out my life for it coz if your friends don't believe you and make you feel totally alone what's the point of them being mates.

To be honest I think my partner now would be the same coz I don't try to show how much pain am really in but only coz his mums a midwife and works in the same hosp as I go it he believes me plus I'm waiting to go into hospital for a op. But if i was you take him to ur appointments and get the dr to explain it all to him coz when they actually understand it he might start being sympathetic again xx

[synnova96]

endometriosis-uk.org/gettin...

Sorry you've been through this: get him to read this and maybe the dr- endo can only be definitively diagnosed by laparoscopy. If he is really not supportive of you after this then maybe consider if he's the one that you want to be with. Thousands of women with endo go through this abusive attitude from drs and friends and family and it's just not right. Print out all the information and get him educated. (Feeling angry on your behalf- hope he comes round)

[LeyaC]

I unfortunately went through a phase of this. Thankfully my partner came out the other side of it being sympathetic again. It sounds awful but I made him feel really bad for it. Usually when I'm in pain I call for him to come and cuddle me till it calms down a bit, instead i called for my mum to come cuddle me and i wouldn't ask for his help when i could barely move, i made sure he didn't know when i was in pain and that if i was he'd sense and ask if i needed anything and I'd always reply "no because you dont think its real so dont help me." Soon enough he felt left out, guilty and kept grovelling to try and help me again and i finally flipped at him and told him why i have been this way and he couldn't believe how bad he had been. He was really mean at times about how i might need a psych assessment because the gynae said it was my my head. During the argument i told him how i felt when he said this and described a situation in which he would be offended if this happened.

Anyway, i rambled a bit there but i hope that maybe that could help and i know it sounds like an awful thing to do but he needs to realise that you dont appreciate being told you're lying just because a gynae can't see anything on a scan. At the end of the day, everyone needs a lap to diagnose it as its impossible to see Endo on any scan.

Good luck hun and hope it gets better soon.

Leya xx

[Brownlow]

Hi angiechick,

Endometriosis is a very mysterious and complex condition that doctors don't even understand. It's a common misconception that doctors know everything and that they are always right.

Your consultant is clearly not an endo specialist?? otherwise he would know that an internal exam is unlikely to prove endo and his next step would be laparoscopy. A manual internal exam by your doctor won't prove anything. Endo is difficult to spot on ultrasound and often doesn't show up at all. Did you get any blood test done as well?

You need to go back to your GP and demand a referral to an endo specialist or even get your consultant to refer you on to an endo specialist. General gynaecologists are not experienced enough to deal with this from what I have been reading. Better still, choose your own here: bsge.org.uk/ec-BSGE-accredi... and tell you GP who you want to be referred to. You have the right to choose your specialist on nhs.

As synnova96 suggested show her link to your doctor too.

This article might also be helpful to show your doctor and your sceptical partner. dailymail.co.uk/health/arti... There are plenty of articles just like this one.

My husband is one of the most caring people I have ever met but several years back he didn't fully grasp what I was going through. When I was so wrecked that I had to stay in bed he thought I was being lazy. He is now absolutely mortified that he didn't believe me and he has made it up to me.

Take care of yourself. We all believe you. x

[shali1981]

It drives me insane. Because you can't see our illness doesn't mean it's not there.

As for your partner I would explain to him that your Dr clearly isn't a specialist in Endometriosis as any GP with a slight knowledge of endometriosis knows that a definitive answer can only ve given by a laparoscopy xx

[persil]

Hi

Yes I know this feeling my usually kind and caring husband is suffering from disbelief at the moment and also thinks its all in my head he has attended all appointments and see's me in pain and with symptoms daily I've had many procedures and am on med's daily. I have stage 4 endo affecting my bowels and it'd awful to live with.

I just remind him that he's very healthy and perhaps one day he won't be.

Then just sit back and remember 'why would you make it up

Men and mates hey as long as you know the truth you don't need to convince anyone.

good luck x

[angiechick78]

Thank you all for the replies. It's so nice to know I'm not on my own. I had it out with my other half today and told him how I felt. And he said it was nothing to do with what the consultant said he had been distant because I had been so moody and bad tempered (yes I'm on!!) and if he stayed out of the way he wouldn't get snapped at!! MEN. He has now read all info you lovely ladies have suggested and I've explained when I feel like poo I don't mean to take it out on him and I need more tlc not less lol. But all good again now. Thanks ladies xxx

[Hidden]

Hello YellowRose.

Can you come and sort out my unsympathetic husband too?

Much appreciated. Xxx

[Hidden]

I couldn't agree with you more YellowRose.

What annoys me is when the hubby says "why have you got pain again?" I keep showing him articles and books but I still get the insensitive questions!

Keep up the good work.

X

[Hidden]

YellowRose..... LOL x

[Brownlow]

Hey Cuddlybarb,

I'll come around and sort him out as well. I'll bring my husband too! He's 6'2" and he's very strong!

[Hidden in reply to Brownlow]

Thank you!

My husband needs a strong talking to.

All I want is a cuddle and to be told that someone is on my side.

Thankfully this forum is amazing for support.

Have a good day.

X

[Hidden]

David Beckham .... I'll bet he would support us ladies.

X

[Brownlow in reply to Hidden]

Now there's a thought!

Have a good day and hugs from me. x

[cupcakegirl]

My now husband later admitted that he didn't believe me to begin with - he hoped I was making it up so then it would go away. He wasn't brilliant with the illness stuff and I would get upset that we never talked about it. He got better when we spoke to a specialist after an op who confirmed the endo had worsened.

Over time, seeing everything I've been through, he's become absolutely wonderful and more supportive than I ever imagined. Give him time - people don't understand this stuff til they've been through it. Show him some reliable literature that says it's rarely ever diagnosed by scan - eventually he'll see what's happening.

[classiebird]

I think we've found u a new career. I'll get in touch with channel 4 and we can make a reality TV show in which u travel the country lecturing endo women's husband's and boyfriends.

Or the spouse of women with any hidden illness. I work with a lady with chronic fatigue and she has d same problem.

Oh can u do mammys too? Mine is a nightmare tho weeks of refusing to talk to her are starting to pay off.

It will be much better den some of d other crap that passes are TV these days

[december67]

I am so sorry to hear what you are going through. I was diagnosed 7 years ago. My husband was supportive in that he was concerned about my well being. Endo can't always be scanned using mris cat scans sono. I went through all of these before a gastro-surgeon told be that it might me endometriosis. I then went to a surgeon who did lap exploratory surgery and thats how I found out I have it. My husband is tired of dealing with me complaining about the pain each month and the pain when having sex. Its like they can't understand what we go through because no one can until they feel it for themselves.

[spammie85]

My other half has always been very supportive and actually tells me off if I try to do something I shouldn't as had a lap recently. He found it very helpful a I went on endometriosis UK website and requested the booklets they have on what is endo etc n they email them to you for you to print out.he now understands it more fully and also comes t appts with Me so he knows what is going on.

[Scooteeder]

Hi "angiechick78",

Looks like you have a LOT of sympathetic support here, already. Maybe this, on its own, is something to show your partner? After all, it kind of PROVES to him that there are LOADS of other women out there, going through the same sorts of experiences as you... WOMEN WHO TOTALLY BELIEVE YOU.

I'm also going to add my "take" on things, for what it's worth. It's a sort of "advice list" that I put together for myself, to remind me of all the things I could do to take charge of the "Endo situation" (as I call it!). Tips on how to deal with insensitive people who don't understand Endo, or are ignorant, or have never heard of it. Tips on how to cope with Employers. Tips on how to get the best from my Doctors...

Maybe some of it could be of use to you? (If not, you don't have to act on my advice... just know that I empathize with you)...

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....

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!!

[Hidden]

My gyno told me before I had my lap. done that even if she can't see the spots, it can still be endo. When it starts, it is super microscopic. Meaning they can only see it with a microscope. They 99% of the time will never see endo on internal ultrasounds or by scans. AND if they say anything about the pain not being bad because the spots are so small; they are liars. I found through some online research that the small ones (at the very beginning of the spots forming) hurt usually way more then older spots; because your body is fighting these "new intruders".

[mama1]

My hubby and family and friends have all been amazing, but wanted to say that I had an internal and it did not show any Endo.

Gynaecologist was still convinced I had Endo though as my symptoms pointed to that, so he booked me in for a lap, he done the lap himself which was great,and sure enough I had Endo on the womb, ovaries, and bladder, so just because it doesn't show up on internal does not mean you don't have Endo.