I guess I'm a lot luckier than most in that my endometriosis has been diagnosed with 95% certainty without the laparoscopy. I'd always had super painful and heavy periods, with nausea, vomiting, diarrhoea, etc. but I just assumed that I was meant to be that way. Having an episode of severe pain and PV bleeding the discovery of a haemmorhagic cyst, which ruptured and then, when symptoms persisted, the possibility of endometriosis was discussed.
However, since symptoms have continued to be present, despite being on hormonal treatment, it has now been decided that a laparoscopy is required, both to diagnose with 100% certainty and maybe remove any endometriosis that is evident, in an attempt to ease the pain that I continue to suffer and preserve fertility, if the diagnosis is indeed confirmed.
The main issues that I have right now are mood. I don't think I've allowed myself to process things. I haven't allowed myself to feel sorry for myself or take time to come to terms with it. I know that it's not something that's going to kill me but it has the potential to take something very precious from me, the idea of having a family at some point, the ability to live without the fear of randomly bleeding or being struck down by severe pain. I am in the healthcare field and I feel like many of my medical team feel that because of my background that maybe I have some greater level of understanding of the condition and therefore may not require as much support, which is entirely untrue.
I am dealing with a number of other health issues right now too and I understand that I might just be feeling low because of the effects of my hormonal treatment, but I am scared to stop this treatment, for fear of the pain coming back with a bang. This last two weeks or so I have realised that there may be a deeper issue and I'm trying to explore options to lift my mood and find someone to talk to, without wanting to burden friends or family, because they have their own problems. However, if I am to wait for 2 years or more (which is how long the current waiting list is for surgery), I need to find some sort of support system.
Has anybody got any advice on how to help?? How did other women cope with everything?? I'm starting to feel like I'll not feel happy again
So sorry to hear you're feeling low...it's perfectly normal to feel like that...anyone with such a debilitating illness feels exactly the same!! And you're right, feeling down may also be a side-effect of the hormone treatment.
Yes, I agree, it doesn't matter what your background is...or whether or not you have an in-depth knowledge of medicine...when you're affected by a serious illness you need as much support as anyone else.
I also have been finding it very, very difficult to come to terms with a horrible diagnosis of endometriosis and adenomyosis found via a lap in September...in fact I've thought of very little else since. The extent of the disease was a real shock to my system and the way I've subsequently been dealt with by the hospital has just compounded my sense of isolation, frustration and quite honestly despair. I've been truly disillusioned by the very people I thought would be able to help me.
The way I've dealt with my situation is by trying to find out as much as I can about endometriosis and adenomyosis....Like most people (including many of the people within the medical profession it would seem), I was entirely ignorant about these diseases until I was given my diagnosis. Since then I've been reading as much literature as I can and I've been religiously jotting down all the ways that various women have managed their condition. I've kept myself going by trying out the endo diet....cutting out all inflammatory and oestrogenic foods and experimenting with a host of weird and wonderful ingredients that I'd never heard of before! I've also been taking various supplements and I'm using bio-identical progesterone cream which apparently doesn't have the nasty side-effects of other hormone medication...it seems to be doing me some good and finally I feel that I've started to have some degree of control over my own health.
I'm keeping a diary of what I eat, how I feel and what I've managed to do. I've started going to yoga and fitting in a long walk every day.
I've also found it really therapeutic to talk to friends and other women I've been messaging on this website...it's been wonderful to feel that I'm not alone and that other people are experiencing similar if not even worse symptoms to me...it helps to put everything into perspective.
Finally, I've been very, very lucky in that I've got a partner who's been able to put up with all my tears and rants...I know that it hasn't been at all easy for him to see me crippled by pain and to listen to my constant moans and groans and mouthing off...but as I always tell people, that's what he's there for ;)!!!
Seriously, don't worry about 'burdening' other people too much...if they truly care about you, they will understand. It's perfectly normal to vent and if that's what you need to do, then you go for it!!! It's not healthy to keep all of your worries to yourself.
Anyway, please know that you're not alone and that there are people who care about you. You're right...you do need some time to process things and you do need support right now. Please don't be afraid to ask for it from friends and family and other women going through the same horrible experience.
I genuinely do feel at times that I'm completely alone in this because there are issues that my family are going through and I don't want to add to them. The man I was seeing for a while there was a great support up until I found out that I wasn't the only woman he was involved with so now that that's kind of come to an end aswell, I feel like I'm back to square one with trying to deal with things. Again, maybe finding out I had been lied to by someone I trusted so much hasn't really helped the way I dealing with things but still.
I'm hoping against hope that when they do the lap that they find out that nothing is wrong and I'm just really unlucky and have painful periods.. I'm waiting on another surgery for an unrelated condition so I don't want to be constantly talking about my health and everything to people in case they think it's all for attention.. Normally, I would deal with stress and upset by going to the gym and stuff but again, both because of the endo and the low mood, I haven't really had much energy to do it and that makes things worse because the weight gain caused by the hormone treatment is really putting pressure on my self esteem and causing poor body image, which isn't great..
Did you find that you have very little energy aswell, or is that just me??
No, you're definitely not alone re. having little energy...in fact I feel tired pretty much all the time. I've stopped going out and meeting up with people and I've cut down on invitations to friends and family to visit me...I just find even talking to people exhausting!!!
I'm so sorry to hear that you've experienced so much emotional trauma...not at all helpful when you're feeling ill. Apparently, as with most conditions, endo doesn't react at all well to stress...I've read that progesterone ends up getting converted into cortisol which can lead to hormone imbalances specifically oestrogen dominance which seems to contribute to the development of endometriosis.
I honestly don't think people could possibly accuse of you of seeking attention when you're clearly so ill! The problem is that no-one seems to know anything about endometriosis, so maybe your family just need more information to better understand what you're going through??
I've been reading a very good book by Tamer Seckin 'The doctor will see you now' and have been reading passages out loud to my partner so that he can appreciate just how serious the condition is and why I'm feeling the way I do. It has helped him to be more sympathetic and to stop worrying that I'm getting a bit obsessed about my health!!!
Do you have any friends you can talk to? I've been emailing an old friend of mine who coincidentally also has some endometriosis...she needed to have a surgery to remove an ovarian cyst. It's been fantastic to be in touch with her and share experiences.
I really don't think you should keep all your worries to yourself...it's actually amazing to discover how supportive people can be when you reach out to them...as I said, you need support...don't be afraid to ask for it.
Have you tried contacting your local Endometriosis Support group? You can find out the details by following the link on the Endometriosis UK website: endometriosis-uk.org/suppor....
Sorry to hear about the weight gain too...that's not good for your confidence and self-esteem, as you say. Do you have time to go for walks? I often feel I don't have the energy for it, but once I force myself I always feel so much better and usually end up walking further than I'd initially thought I would. It's really good for mental health as well as physical health. Have you tried the endo diet? I ended up losing quite a lot of weight when I started and it's helping to keep my bloated belly down a bit, as is the yoga. I'm only doing a very, very gentle type of yoga with much older ladies (at least I don't feel too out of place!!!)...it always helps me to feel a bit more energised and generally stronger and more resilient.
Quite often it's just a matter of taking a few small steps in the right direction..once you get started you often find that things you thought you couldn't do start to become routine and problems that you thought you could never overcome suddenly seem to be much more within your control.
Please try to be kind to yourself...it sounds like you've been dealing with an awful lot on your own which would end up being intolerable even for the strongest person. You don't need to deal with everything by yourself, in fact I'm sure you'll find that once you're able to share your fears and worries, you'll end up feeling much better!!!
Can I ask where you get the progesterone cream from? I was diagnosed with endo via a lap at the start of this year after going through tests, examinations, a trans-vaginal scan (which found cysts on my ovaries) and an mri all through last year. I felt very much the same way as both of you with the diagnosis. I felt very low and was desolate that there is no real cure. I felt very alone even though i have a very supportive husband. I've read as much as I can about endo but have been disappointed by my healthcare. I had zoladex injections for 6 months which suppressed my hormones but was discharged by the consultant and referred back to my GP. Now my periods have returned and so have my symptoms so I need to decide how I want to proceed. I feel too young for a hysterectomy and don't see how it will help when my endo is everywhere in my abdomen. The surgeon was going to try and remove the endo when he did the lap but it turned out that there was too much and my large bowel is stuck to my uterus and ovaries so nothing was done. I would appreciate any information on treatments you have tried. I too get very tired and exhausted. I've put on weight and feel bIoated a lot of the time. I dont sleep well and so get very grumpy and short-tempered as a result of this. I've also reduced my hours at work because I'm in so much pain and discomfort. Thanks for listening xx
So sorry to hear you've also been experiencing the same horrible problems!
Yes, I found the progesterone cream via the internet...there are quite a few brands out there. The one I'm taking is called Serenity by Wellsprings...other brands are Unique (there's a website you can see with a naturopath advising you where to put the cream on) and another one I've ordered is Biovea's own product...I bought quite a few other good things from Biovea, so I thought I'd give their cream a go.
Again, I'd strongly recommend trying to cut out all inflammatory and oestrogenic foods to give your body the best possible chance to get better. I've noticed that there's been a lot of coverage recently about how changes in diet and lifestyle has helped diabetes sufferers...I'm convinced that endo sufferers can also benefit in the same way by keeping control over what we eat and making changes to our lifestyle.
Is your surgeon an endometriosis specialist? Can't you ask for your endometriosis to be excised? You're right to question whether or not a hysterectomy is going to get rid of all the endometriosis..please do read up on this as much as possible (there's loads of information on the internet and in various books written by reputable surgeons)...from what I've read, doctors should only advise having a hysterectomy as a very last resort and many doctors don't recommend the removal of ovaries.
I've found that we really do need to read up as much as possible about possible treatment options, because doctors are sadly not always very well informed!! Is it possible to seek a second opinion or go to another Endo Centre (I'm assuming you're being treated in one already?)...These are very important decisions that will affect the rest of your life, so please be sure whatever treatment is offered is the best one for you.
Wishing you all the very best on the road to better health.
Thank you for the reply jjeemm. No I'm not being treated at an Endo centre and my surgeon was not an endo specialist. Luckily for me he didn't try and 'burn it off' as I've since found out that ablation doesnt work. My lap was done at my local general NHS hospital. I didn't know there were Endo centres. No one has mentioned them to me let alone referred me to one. I think if I'd have said that I don't want anymore children they would have gone ahead with the hysterectomy! I feel really let down by the NHS and feel like I've been left in limbo. I'm actually going to my GP tomorrow to discuss what my next course of action is and so I'm trying to find out as much as possible as to what treatments are available. Many thanks xx
I really wouldn't trust a hospital without BSGE endo accreditation to perform surgery on endometriosis. Yes, I agree, surgeons may be all too quick to recommend hysterectomies as a quick and easy solution...my sister had one and wasn't informed about the possibility that she could have had alternative surgery for her condition...she hasn't been the same since, even though it's almost 3 years ago that she had it done...
Yes, I know all too well the feeling of being let down by the NHS...they've been letting me down for decades now and I'm STILL waiting for the removal of my endometriosis which is currently fusing all my organs together....it's taking far too long and is quite scandalous really.
I've been thinking of opting for private treatment but not quite sure who to contact or where to go, but I'm honestly getting to the end of my tether...while we're all waiting for treatment our conditions can only get worse!!! Grrr!!!!
Yes, try to do as much research as you can...if your GP is anything like mine, they may well end up knowing less about the condition than you!!!
Please stay strong and try your best to find the best possible treatment for you...we owe it to ourselves.
Sending supportive hugs and best of luck with the GP tmw! XX
Thank you so much for the information. I will have a read tonight so that I'm prepared and know exactly what I want in terms of treatment. It really does help talking to women with similar symptoms and diagnosis to me. Although most that I've actually spoken to have had hysterectomys but that's not the road I want to take. That would be my last resort. I'll keep trying until I find something that works. Best of luck to you too xx
You're very, very welcome!! I'm so pleased I could help even in a little way!!! Yes, it's so difficult to get your head around everything when we receive such little information about the disease...I've never yet even seen a poster/leaflet/pamphlet about the disease in a health care centre or hospital...basically everything I've found out about endo has been through my own searches on the internet (thank God for the internet!!) and through reading all the messages on this website from other women...thank you everyone for sharing!!!
I also really, really don't want a hysterectomy and will try everything possible to avoid having one. It may help tomorrow before you see the GP to try and write down all the questions you have about possible treatment options...how you feel and what your symptoms are (don't know if you've kept a diary...this can be very helpful)...I often find that once I'm in front of any sort of doctor my mind goes blank and I just start getting emotional and anxious and I come away feeling I could/should have said so much more!
Really hoping the appointment goes very well..and please do insist on a referral to a specialist Endo Centre straightaway...don't let yourself be messed around waiting to see the right person!!!
Wishing you all the best for tmw...hope it all goes really well for you! XX
Snap. I get anxious and emotional too. And forget to mention things so I have thought about writing a list. Lol. And it's not my usual GP as she's now on maternity leave but I have seen this other one before and both are sympathetic and understanding. I've also noticed that there are no posters/leaflets in surgeries and healthcentres considering 1 in 10 women are suffering with endo! We need to start a campaign. There's no local support group near me either. Like you said thank god for the internet and forums like this. Anyway thanks again for the advice xx
Stress just fuels this disease so yoga, meditation, being around family and friends. Gotta control mood and stress to suppress this disease. And diet is a HUGE factor here. I can be completely symptom free and with lovely light and painless periods if I eat a clean anti-Candida diet. After having exactly same periods as you from the age of 13, to be able to control my periods is amazing. You can too I’m sure of it. Join the Facebook group and chat with all of us it helps. When I found out I had endo I thought my life changed but honestly it really doesn’t have to. We don’t have cancer and most of us can go on to have children so lift your spirits Hun & do something you enjoy doing. Xx
Sorry for not being on this before now.. I've been doing my best to try and keep busy so that I don't have to think about everything too much.. I think I'm finally starting to get my head around the whole basically being cheated on 4 times things and now that I've started to accept that it's happened and I can't change what he's done that things are slightly easier.. I also have thought that maybe I've been getting really bad PMS because my period just arrived and now that its started, my mood has started to settle a bit.. does anyone else find that their PMS is worse with endo or when they have the contraceptive implant in?? My periods are now infrequent and a hell of a lot lighter now but still very painful when they do arrive but I'm nearly willing to accept this because they dont happen quite so often..
Do you really find that diet plays such a key part? I'm very much so an emotional/bored eater and that probably hasn't helped the weight gain but I don't know how to approach it because I lack motivation to do pretty much anything right now
Thanks so much for all your help and support too you guys!!!
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Laparoscopy tomorrow, feeling nervous now
Laparoscopy- still feeling rubbish at WEEK FOUR! 😩😭
Do you feel your laparoscopy was properly looked into?
Laparoscopy Cancelled 
Feeling low and alone.
