Boyfriend in need of help

Hello,

I found this community and hope you might provide me with some advice.

My girlfriend has had endometriosis and recently has had terrible pain. Usually she is able to manage it but over the last few weeks it has been 100 times worse by her own definition. We have been up to A&E on 3 occasions but the doctors aren't gynaecologists and don't understand the condition there (one even said it was constipation).

My problem lies in that a few weeks back she had an ultrasound and a gallstone was found. She is the process of seeing her GP about it, but in-between time we have been up to A&E. The issue is she is adamant that it is her usual endometriosis pain and that obviously I don't understand when I broach the subject that it could be gallstone related (thinking that why else would the pain suddenly go through the roof without a reason).

All came to a end last night. We waited for 5 hours at A&E. She had a blood sample and urine sample and was prodded about. She was then taken to a short stay area which wasn't very nice at all. She was told a member of the surgical team would see her but that's it.......no one told her why. All this stressed herself out more, especially when she thought that no-one understood what the pain was and they were looking for the wrong thing. So she ended up discharging herself.

I think she should have waited but she won't listen to me because I don't "understand".

I really don't know what to do. I have been trying to find some kind of link online between gallstones and endometriosis. Does anyone here have any experience on this? At least then I can show her it is from others that DO understand and she might take more notice.

Thank you,

Darren

11 Replies

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  • Hi Darren,

    She is one very lucky lady to have such a caring man. She will be feeling terrible so unfortunately she is probably pushing you away. But hold in there. She really needs you.

    In my experience. If I know what a certain pain is related to, I'm normally always right. You get to know your body when you have pain a lot. So maybe trust her instincts.

    Without knowing her exact symptoms it's hard to say if it is typical endo pain. Endo will flare up to the point you cannot walk and it is very typical for the pain to start randomly.

    I have also been in and out of hospital for 7 months now in pain. And my advice is to go to the GP and demand to see an endo specialist as soon as possible. A&E will only help her manage the pain.

    I have no idea if the pain can be similar with gall stones. As far as I am aware is gallbladder pain tends to be more in your back. Under the right shoulder pain. Which is most likely a different area to endo pain.

    As for being sent to the surgical department after A&E. This is very normal, that is where I always end up. They would do further tests to rule anything serious or urgent and get the pain under control, then tell her to go to her GP. She probably should have stayed but I understand why she didn't. Call her GP today to make an appointment and offer to go with her. That way you can ask some question and be more demanding. Your girlfriend will be so worn out with the pain that she won't have much fight in her do you could really help by being there to make the demands for her.

  • Thank you :-)

    I am trying to find as much info as I can. She doesn't like talking about it and discussions with me are from a starting point of I don't understand. I do understand a lot more but this leads me of a dilemma in how I broach it to her without sounding like some new endo expert?!

    She is probably right and it isn't the gallstone but would still like it removed obviously.

    I am going to see if I can get her referred to Guy's hospital (I have heard good things about it and a colleague at work said it was fantastic for her). I am hoping that because she has been in and out of a&e that they may see her as an extreme case.

    She would like a hysterectomy but she is too young (34), even when she and I do not want children.

    I will try and push her and suggest these things (and anything else that is suggested - thank you so much for that), but I can't see how I can get through the "you are a bloke, you don't understand" part. By being strong would probably mean an argument and stressing her out more.

    And the fact is I can do all the research going but will never comprehend that pain.

  • Hi, Firstly let me say well done for standing by and supporting your girlfriend. Unfortunately it's all too easy to forget that endo just doesn't effect the sufferer. It effects those closest to them also. Hang in there as it will be hard for your girlfriend to be rational and realise all you are doing for her whilst she is pain. Sometimes when the pain is that bad it's all you can do to get yourself through the day and to think about other people's needs and feelings at the same time is just too much.

    Secondly it is crucial you & your girlfriend get the right information about endo so that you can both play an active role in her treatment plan.

    Unfortunately I know through personal experience that the myths around endo still exist amongst some medical professionals and as such amongst some sufferers also who, understandably, perpetuate the myths regurgitated by the medical professionals involved in their care.

    Hysterectomy and/pregnancy rarely "cures" endo and any medical professional telling you otherwise is wrong. There is plenty of well documented research available to read in published medical journals (including online) to support the fact that hysterectomy and pregnancy are neither "cures" or valid/necessary treatment options.

    Hysterectomy is actually only removing the uterus and sometimes the cervix, not the ovaries. Removal of the ovaries is called a oophorectomy and removal of the Fallopian tubes is called a Salipingectomy. Removal of any of the reproductive organs doesn't take into account endo that may be, and usually is, elsewhere such as the bowel, bladder, peritoneum etc. So unless ALL endo is thoroughly removed from ALL areas effected then symptoms are likely to continue.

    Pregnancy sometimes, for a few women, results in symptoms reducing or diminishing altogether. However more often than not at best all it does it dampen down the symptoms whilst the woman is not experiencing periods only for symptoms to return later. Sadly for some even pregnancy provides no respite.

    If you live in the UK is your girlfriend being seen by a BSGE accredited endo specialist? Endo is a very complex and, as mentioned earlier, doesn't tend to "just" effect the reproductive organs which is where general gynaecologists interests predominantly lie. An endo specialist is more likely to a) be able to recognise endo in its many different forms and b) have the skill and expertise required to thoroughly excise it (ie cut it out). Burning endo, particularly more deeply infiltrating endo, is less effective as it merely removes the top. It doesn't remove it from the root meaning, much like a weed, it tends to grow back. Research shows that thorough excision surgery increases the likelihood of either endo not returning or symptoms reducing in 56-66% of cases.

    You can find a list of BSGE accredited endo centres at the following website: bsge.org.uk.

    Unfortunately not all endo centres are equal, some are better than others so it pays to ask around for recommendations. Whilst you are not able to openly discuss individual centres or specialists on this forum you can through PM. Alternatively if you haven't done so already join a group on Facebook called Endometropolis where you can openly discuss such things and request recommendations. You can then request a referral via your GP to any one of the nationwide centres on the list, although I know of at least one that only sees private patients now (Elland Spire).

    If you are not in the UK Endometropolis is also a good place to look for recommendations of surgeons in other countries.

    It is very important to have access to the best surgeon available as this can reduce the number of surgeries needed. Unfortunately with each surgery comes the risk of adhesions and scar tissue forming which in turn can cause pain and other issues in themselves. This is why it is so important to choose the right surgeon.

    Finally it sadly is critical that women with endo do everything to educate themselves on this horrid disease as unfortunately there is still a lot of inaccurate and misguided information out there. You can't necessarily rely on your GP or a gynaecologist to provide you with the facts. A good reliable source of information on endo can be found on a website called Endopedia so this may be good place to start if you haven't visit this website already.

    I hope this helps and I wish you all the best, Jo.

  • Hi Darren

    I'm 33, and an endo sufferer. The fact that you're there and supporting her, giving her a shoulder to lean on is awesome. She knows this and if she's anything like me, she may feel guilty because she is unable to reciprocate those feelings. It sounds silly, but the constant pain can drag you down a lot and lead to dark corners of your mind where it feels like there is no escape. I'm lucky that I've got a very supportive partner as well - neither of us want children either and I was told that my condition isn't bad enough to warrant a full hysterectomy, so I've gone down the laparoscopy route.

    Things that you can do:-

    1. If you can afford to go private or if you have private medical insurance, I'd highly recommend it. Personally, I've had nothing but negative experiences with the NHS in the diagnosis and treatment of this condition.

    2. I found that the most difficult thing about this condition, was the inability to be myself - to be happy and jovial and I couldn't do the things that I most enjoyed doing.

    Try to keep her in good spirits. Make her laugh, make her smile, try to be positive about everything. Be supportive, be there for her. Try to do things pre-emptively around the house like making dinner, doing the laundry - all those little things that she might normally do. Keep things ticking over.

    3. Try to find her a local support group, and if there's none available, an online support group specific to her condition. Talking to other ladies who have a similar condition is really helpful in knowing what to expect from different treatments or just generally having someone there who knows what you're going through.

    Stay Awesome.

    Sozz

  • Thank you for all your help and ideas ladies. It has been really eye opening.

    I act the div like the best of them, so no worries about keeping her laughing! Part of my appeal!

    I have sent her this link and said no more. Hopefully she will realize that I started this thread because I really do care and worry.

    Then I can go back to being a "bloke" I suppose ;)

  • Well done you for being such a great guy. I myself have a supportive partner and I can't tell you how much it helps to have someone who cares... Yu mentioned guys and St Thomas'... I go there. It is a wonderful place and can highly recommend it... They have two ways to be referred... The acute gynaecology clinic that you can be referred to by a&e or GP or the endo clinic where the GP must refer you... Asl to be referred to Mr Kumar Kunde (endo specialist). You'll likely also get an appointment with the specialist nurse Claudia who is lovely.... Tell your girlfriend about this forum also... It's a great place to vent your frustrations to people who are going through the same problems. I appreciate you are trying to understand but in her eyes - you will never know the pain. Girls/women in here will so get her set up on here. This along with the referral to Guys was the best thing I've ever done. Good luck and hang in there... When she feels a bit better she really will appreciate you being there for her. 😊

  • Hey there

    It's great that you are trying to support her. I'm lucky enough to have a supporting partner and I couldn't get by without him.

    I would second some of the suggestions such as going to an accredited centre and going private.

    One of the hardest things about this disease is people (ie medical professionals ) not believing the amount of pain you are in and not listening to you when you say you think it's endo.

    In addition they only look for the bog standard symptoms and have a habit of telling patients that it isn't endo if they don't fit. Docs just don't seem to be well educated about this disease.

    I was told that I didn't have endo because my pain isn't cyclical (it's daily), and" people with endo don't describe a burning pain as you do". My friend went to a male gp in agony and was told to take paracetamol as its "just period pain". She had fainted from the pain before.she nearly died that night because she had an endometrioma (endo cyst) burs and didnt get the treatment when she tried.

    You can imagine how frustrating and disheartening this is. Especially when docs try to tell you its all in your head ( they do).Personally I've become extra defensive about endo because it took over a year of pain just to get a diagnosis, another 6 months to get treatment. And I've lived with kidney pain for another year now without diagnosis or treatment. All of this is with me fighting every step to speed things up and paying privately for second opinions when some twat of a consultant wrongly told me I don't have endo.

    A hysterectomy won't help endo that has affected other organs. In my case it's on my bladder..(possibly inside it /ureters /kidneys)

    And regarding pain.. I get severe stabbing pains which cause my whole body to spasm and I cry out. My legs buckled the other day when this happened. They thought I had kidney stones but the latest theory is that the endo is inside/on ureters. many of the girls here are on morphine like me. I'm no wimp either- as I keep saying to docs I've had broken bones that hurt less than this.. I don't want to frighten you but this disease can result in bits of your organs having to be cut out..and I don't just mean the "women's" bits. So believe me when I say that your partners pain could definitely be caused by endo.

    If she's anything like me she will try to downplay the amount of pain she is in because she doesn't want to burden you. I'm sure you already are doing this but my partner does the following which helps me:

    - he comes to my appointments with me. The doctors seem less likely to fob you off if there is a man in the room.

    -he gives me cuddles and back rubs when I'm in severe pain. Many people with endo have their sex life suffer. It helps if you can still be affectionate and tactile even if you cant have sex.

    - he doesn't chide me for staying in bed all day on the bad days. He's seen me suddenly not be able to walk in the middle of the food shopping. ( we do this online now)

    - I try to do housework when I'm able and he appreciates what I can do ( even if it's minimal)

    - he asks me every day how I'm feeling because he knows I try not to burden him. I'm in pain every day..hat varies is the intensity.

    And just to warn you - you are in for the long haul. There is no cure for endo, it is a life long condition. Everything the docs do will only get rid of it for a while or keep it at bay.

    The number one thing you can do for your partner is to believe her,because it is likely no one else will.

    Hope this helps

  • You've had comments on endometriosis, so I'd just to say you're a fucking star!

    My boyfriends got used to the moaning about stuff... He now just makes sure I'm comfortable, resting, eating and more importantly drinking water or whatever regularly and forcing me to take painkillers, hot water bottles, hugs, back rubs on the bottom of her back will earn you millions of boyfriend points, a stack of films prepared in advance and when she's in the pain you feel is enough for her and you, call a paramedic. She will hate you at the time, but make sure in hospital she has regular painkillers, if they are not helping ask for stronger ones, make sure she stays in no matter what.

    Being by her side and not ignoring her will mean the most.

    Good luck ;)

  • Oh and tell her if she doesn't sort it out now, it'll be so much worse the longer she leaves it...

  • Hi Darren

    I had a similar experience earlier in the year .I am currently waiting for more endo surgery but a few months ago I was admitted to hospital turns out I have diverticular disease as well but the paind that I had was definatley endometriosis pain .I know it's not the same as gall stones in anyway but just wanted to hi light we can have a few things going on as well as endometriosis .I hope she can get sorted soon maybe by getting the gallstones sorted may help a little .

  • Hi Darren Just joined the site and seen your message and like many of the other blokes who's partners are sufferers just hang in there. The frustrating part is not betting to the right people that can talk your girlfriend through the issues and possible remedies that will give her and you a quality of life. My Partner has suffered for 30 plus years, had surgery and was told she would never have children which for most women is like being told they have a terminal illness. However there is light at the end of the tunnel and one of the members here I see has mentioned guys and St Barts and the first step is push for the referral and get your girlfriends confidence in speaking to someone that understands their problem, in general GP's don't have the time and that's if you can get an appointment so persevere.

    My mates have no idea what we blokes go through who's partners have Endo in whatever its form having an irritable woman for a coupe of days would be bliss !! it does vary from mild to extreme as many ladies will tell you on here I am sure.

    I am not sure what age your girlfriend is and what plans you have for the future but getting the right advice now is key so hang in there mate and all the best to you both ;0)

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