Helping those around me understand what ... - Endometriosis UK

Endometriosis UK

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Helping those around me understand what im going through

Cherry_blossom_ profile image
14 Replies

Hi everyone! It is really nice to find such a welcoming community.

I haven't been diagnosed with endo even when I had an endometrioma removed last year. I have tried to explain my partner and closest family what endometriosis is and how it will affect my life moving forward buy I have found that they are treating it like just bad cramps and won't make any efforts to listen or try to do even the slightest research and just tell me to get on the pill.

Does anyone have any advise on how to speak with them about how frustrating it feels not to be heard?

14 Replies
TheUntamed profile image
TheUntamed

I think the easiest analogy for people is cancer. So I explain that although I won't die from it, this disease is growing lumps around my body, on and invading organs, twisting my organs out of shape and causing pain. And it will never go away, although it might be less active when I hit menopause.

Lindle profile image
Lindle

To deviate a bit from your question the first thing to note that having a confirmed endometrioma is a confirmed endo diagnosis, so you have it. Endometriomas are one form of three identified endo subtypes, these being peritoneal endo (which just affect the abdominal pelvic lining or peritoneum), endometriomas which is ovarian endo such as you had/have, and DIE which is deep infiltrating endo which is defined as that which infiltrates more than 5 mm beneath the peritoneum. This implies that DIE must always originate as peritoneal endo but evidence suggests that not to be the case - it does seem clear that DIE can originate deep within structures beneath the peritoneum which is why a lap is not the gold standard for diagnosis as it can't always be seen at a lap.

It is important to know that endometriomas are often (and many surgeons say usually) associated with deep endo behind the uterus called rectovaginal endo. A problem we have is that endometriomas show clearly on scans but DIE needs an advanced sonographer trained to look for it. Equally a lap done by a non-expert surgeon might just see the endometrioma but not deep endo unless they know how to look for it. So for the purposes of your journey going forward symptoms might include lower back pain often accompanied by leg pain, usually but not exclusively the left. Pain may be worst at period time not only due to painful uterine cramping but probably due to the uterus pulling on ligaments that are usually involved and increased systemic inflammation at period time, but typically there will be some level of pain at other times of the cycle such as those above. There may be shooting pains up the vagina and/or bottom and perhaps pain on walking and sitting, like sitting on a thorn if the bowel is involved. There may be bowel problems such as constipation and problems passing stools which might be pencil thin. The bladder can be involved also. When anyone has endometriomas it is always wise to be vigilant to the presence or development of such symptoms, especially if the left side seems most involved.

But as for telling others you can now tell them that you do have a confirmed diagnosis of ovarian endo and that this is just one form of the disease. You can tell them that the pill only aims to help with pain and relieving/stopping periods and that endo is nothing to do with periods as it is outside the uterus; all of the awareness campaigns that present endo as just some sort of period pain condition really aren't helping to raise awareness at all and just hold us back from making any progress. Let them know that you are likely to be just at the start of your endo journey and the pill can only ever act as a sticking plaster and can actually result in endo continuing to progress and that you now need to be vigilant and aware of the symptoms that might indicate that you have it elsewhere which requires an endo expert to diagnose and treat.

The definition I always use is that endo is a chronic systemic inflammatory disease in which aberrations of the immune and endocrine systems cause endometrial-like lesions to grow outside of the uterus, usually in the pelvis, causing ongoing diseased scar tissue to grow in response to the chronic inflammation causing pain which can be severe as organs and other structures become stuck to each other in the process. This is based on a definition by The American Endo Society. It is important that the people in your life know that it isn't all about periods or lesions that once controlled with drugs or cut out by surgery are then gone and you are cured. The immune symptoms such as fatigue, which can be severely debilitating, can have a dramatic effect on those with endo which they will need to make allowances for.

The analogy above with cancer does assume that everyone with endo has severe infiltrating disease which is not always the case. I think there will be a great number who only ever have peritoneal endo that doesn't progress and it is thought that in some it can resolve. There will be a great number who have endo but never knew it as they never really had severe enough symptoms to go to a doctor and/or just took their experience as normal.

These resources at this link might help:

endometriosis.org/support/p...

WanderingFox profile image
WanderingFox in reply to Lindle

I have all those symptoms you described- left side pain, around hip and buttocks and sometimes down the leg, very much sitting like a thorn. With it I’ve bladder and bowel issues and bloat.

I saw a gynaecologist last night who did an internal ultrasound and examination and said there’s no lumps, nothing’s clumped together so if I have it, it’s not severe. I previous had a MRI too which came back clear.

The gynaecologist has now referred me for a laparoscopy as I had endo in 2016 and he advised from the report that it was burnt off not cut out so it may have returned.

I feel like on the one hand maybe it’s just not there and I won’t get to the bottom of what I have but just reading your comment I’m sitting going, I have all those symptoms so surely it is the cause.

Lindle profile image
Lindle in reply to WanderingFox

Ultimately you know how you feel and those symptoms don't come from nowhere. Any nodules that can be felt are usually high up behind the cervix on the uterosacral ligaments and to put it bluntly it depends on the length of the fingers.

Whether or not he would have been able to see deep endo on an ultrasound depends on if he has the skills to look for - it is an advanced skill that is beyond the normal training. And likewise MRI needs to correct endo protocol and must be read by someone experienced in endo imaging. There are many people who have all these negative tests who are found to have severe endo.

The usual advice if funds permit is to have a private ultrasound by an advanced expert in gynaecological imaging who will be able to find deep endo. It would usually be around £300 - £400. If you would like to join a UK fb group I run called Endorevisited (commended by RCOG) we have a list of UK experts in ultrasound and MRI.

CryBaby91 profile image
CryBaby91

I can't top what Lindle said! But I'll try put my own two pennies in too, because I hate hearing people not being supported by their loved ones. When they start to say "just go on the pill" (on top of what Lindle suggested) i would very calmly remind them that they are not doctors, so suggesting a treatment with no medical experience is dangerous. Endo is not a period problem, the fact that it can cause painful periods and excess bleeding is a SYMPTOM, not the condition. Endo can cause painful periods yes, but that is certainly not all it is. If we had a "cure" then why on earth would people need surgery? If it was just a period problem why on earth would there be a cases where Endo was found in a persons lungs? Kidneys? Even as far as the eye! Please calmly remind them that suggesting you just have a period issue does a massive disservice to how severe this condition is, and how complex it is. You need support, not judgement.

For partners it can be hard to wrap their head around you being poorly and them having no way to help you. I get that totally, and i think lots of the time if people talk and communicate their issues they can sort it out. Sit him down, ask him how he would feel if the boot was on the other foot? Tell him how you want to be supported, and most importantly how you don't. Explain why it's hurtful to hear these "suggestions", and that they may only want to help but actually it is doing the opposite. Sometimes people don't realise they are being hurtful, because they don't understand how something can't be cured with a pill or a surgery. People like black and white, when stuff gets grey and complicated they generally don't like it lol. But just be strong, do your own research if they won't, you educate them :) make them listen! Xxx

Lindle profile image
Lindle

Yes, when it comes to partners I think it is so important that whilst it might not be a shared condition as such it is very much a shared experience that affects them equally. So even beyond one supporting the other they need to be an equal partner on a shared journey on which both need to support each other.

CryBaby91 profile image
CryBaby91 in reply to Lindle

couldn't agree more! My husband was really struggling the other day, he said he's finding it hard to wrap his head around the fact that the surgery didn't completely get rid of all the pain. And the whole unknown nature of endo, there's so many questions and not many answers. Will it get bad again? Will i need even more surgery? Is this the best i can hope for pain wise? It really is a lot to deal with, and when you can't give yourself answers then how can you possibly answer anyone else's questions! It's a double edged sword being diagnosed after over a decade, whilst we have a diagnosis finally we don't actually have an answer for what my future could be like! The diagnosis just gave us both more questions lol xxx

Lindle profile image
Lindle in reply to CryBaby91

Hopefully it was a test for the strength of your relationship. My ex served me with a divorce petition on grounds of unreasonable behaviour in ruining his live with endometriosis!! You couldn't make it up. Needless to say I'm much better of without that excuse for a human being...

CryBaby91 profile image
CryBaby91 in reply to Lindle

Gosh what a wanker! Pardon my french lol but definitely a bit of a tosser lol you're absolutely better off without him! Thankfully not too much of a test, we've been through so much in the 14 years we've been together lol we've got quite good at communicating and making sure we both get stuff off our chest. I'm incredibly lucky that he's so understanding, loving and caring. But even with all that it has still been hard for him, took him a couple of weeks to really get his head around stuff. But he said last night that he lost sight of what we needed to focus on, my quality of life as opposed to trying to be cured. It doesn't help that his boss's wife has endometriosis, she had a hysterectomy and is now 100% pain free. So i think he had it in his head that if i have a hysterectomy ill be cured, but I know it isn't that simple! I'm just glad he talks to me to be honest, so many of us have to deal with all this alone and it must make an already awful situation 10x worse! I always try recognise that the endo will undoubtedly affect him and my kids too, but they all recognise that it affects me most of all and i need love and support. Goes a long way! I hope you have found some decent support and love from someone, even if it isn't from a man :) xxx

Lindle profile image
Lindle in reply to CryBaby91

Treasure that one.

Fortunately I'm fine now. I wasn't even diagnosed until 7 years after a hysterectomy/BSO at age 51. That was after around 5 years of oestrogen only HRT on which I grew huge aggressive mass which was thought on ultrasound to be advanced end stage ovarian cancer assumed from a remnant even though both my ovaries and uterus were found to be complete and disease-free. It arose from my POD so I think I had a Mullerian deposit deep in there that was activated by the HRT. I had a 7 hour excision 13 years ago with my fantastic (now retired) surgeon and touch wood haven't looked back.

Oddly I didn't really have much pelvic pain over the years. My periods were pretty crippling I suppose looking back and torrential with massive clots. I was pretty much confined to barracks as no amount of tampons and thick pads would touch it but it was all over in 2 or 3 days thankfully as it if all came out in a huge tirade. I was prone to lower back pain when I stooped in a certain way but nothing significant. For me my life was pretty much completely debilitated by crushing head aches, dizziness, vision problems, memory loss, and total crushing fatigue. I was pretty much non-functional. It all started mid cycle when coming off the pill after 10 years and then gradually took overall of my cycle apart from when I had the period when it all lifted. For me it was hypersensitivity (effectively allergy) to oestradiol - first my own and then in the HRT.

I still suffer allergies which can be bad at times but generally speaking I am fine given what I went through for two decades. x

CryBaby91 profile image
CryBaby91 in reply to Lindle

I definitely will :) we got together when i was 16 and im 31 next month haha been such a long road and I've been poorly pretty much the whole time (in varying degrees), so he has put up with a lot in regards to missing out on things "normal" couples can do. I always make sure he knows how much i appreciate him, as he does for me too. But i definitely know I'm lucky, I've read so many stories of unsupportive partners!

Oh gosh that is awful, going that long must have been really hard on your mental health? It really does show that hysterectomy isn't a cure though! My periods are usually over after 3 days too, like they flood on day 2 and then suddenly just spotting by day 3. It really does feel like it all floods out on the first couple of days doesn't it haha! Xxx

Lindles answer is rich with information that you’ll find useful. Some people find written or verbal descriptions hard to get their head around some aspects and symptoms- so then if it’s still available there was a documentary earlier this year showing virtual reality of what happens internally for a particular client with a surgeon . The endo patient was really helpful for some of my family to begin to grasp part of the picture. I think it was Channel 5 and was with Mr Khazili.

It’s only part of the picture though. My advice is some of those around you will be more able to grasp or understand. Some will find it hard. Turning the question round can be a good way of finding their engagement point so asking them what they want to know first is helpful.

Lindle profile image
Lindle in reply to BloomingMarvellous

And I think that because we are so used to being invalidated by doctors often for many years/decades and repeatedly told such as 'It's in your head' or 'have you thought it might be stress' that we just clam up and then find it so hard to talk to anyone. My experience was lived through the 80s and 90s when there was no internet and you really were on your own and even as a once-confident person I came to a point of just being too terrified to even mention my 'problems' and just got used to the routine reply of 'fine' whenever asked how I was. It really is devastating to find doctors still doing this. I find my best means of expression is writing and I agree that writing it all down is a good way to go sometimes and hopefully with access to the resources we have now we can at least draw on some evidence to prove our experience is very real.

Achieving good support is always a dance with any chronic condition. Wanting understanding is important and key for not hiding how you are and managing beyond the reasonable odds.

My husband questioned my practice of not always sharing or what version I chose to share with whom. He’ll just brandish it about as it’s his way of trying to look after me. That’s not me so he now mostly gets it when I say am letting folks know what I judge they can handle. I don’t want people running away or glazing over and I haven’t even open my mouth 🤣I also don’t like the way some move me into the “pity file” in their head. I want very much to be seen as me and the things I love NOT my chronic disease. I don’t want to be written off because folk don’t know what I can or can’t do overall or on that day. It’s a way I get to navigate that side for myself instead of stuff imposed on me without discussion. Staying really buoyant is part of my pain and stress management overall It makes the shit times more bearable. Gives me long term real resilience not a paste on smile.

I learned that people have very different responses to someone’s illness between wanting to do everything for you, fixing it for you ( usually with their latest pet theory or what their Auntie Doris did 40 years ago ), labelling you, loving, dismissing and disappearing. Hard as it is it isn’t actually about you at that point, but them and their ways of navigating challenges or not. In a kind way I need to be a bit judgy to survive. Taking that on board has been really useful so that I don’t find myself so isolated, retain my lovely friends and ask for support from those that can.

Letting them know that sometimes arrangements will be changed, delayed because of it is key. Your not saying no your just rearranging or deferring your good times. There is a great way to communicate coping levels to help those around you know where today is at and that’s the teaspoon analogy. We all have 12 teaspoons when we wake up but what we are able to do with those 12 varies from day to day. Elastic teaspoons so to speak. By the time you get out of bed some days you might have used 1/4 a teaspoon or 11 so you either have 11&3/4 or 1 left for everything else. It saves all the details but helps everyone adjust to your level. Some friends use up 4 teaspoons worth of your capacity others 2…

Knowing yourself and what physically and emotionally keeps you going or working out your vulnerable areas means you can make a reasonable call as to which direction to ask for assistance. Some friends are wonderful at doing the feeding you bit, the shopping bit, the girly going out bit, the paperwork and appointments, the watching films and chatting bit. Some are good at making sure you get the best care and standing guard. Some have the wardrobe and hair side down off pat, some are fresh air nuts who will be happy to share that time with you, others at doing the washing or just holding your hand . People want to be there if they know they can do it well and not fail at it for you. Creating situations where you and your supporters feel uplifted is the fuel to keep going through the shit times. Be aware that some simply can’t and will vanish in a cloud of fearful excuses and mumbling. Let them go, spending energy on those who can’t level with your needs is a waste of one’s precious time.

Many people are utterly bewildered and shocked when they encounter the fainting, vomiting, migraine felled, totally exhausted, depressed screaming with pain on morphine bloated balloon who then bleeds copiously has a odd diet, feels a bit or suicidally depressed one day and just dandy the next and has any number of surgeries . It can turn people pretty defensive as they realise their own and the inadequacy of any medical intervention in doing anything to ease things. No amount of explaining will fix it unless they ask to know and find out for themselves. It’s not all on you to do that work. It’s then that this community can wrap their arms around and go we know and your not mad. It is a thing. Working out safe places, fruitful requests and when it’s not worth wasting your breath to explain is a skill most of us have figured out over time. Silence however is a killer .

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