I last posted on here in February 2019 about going in for my laparoscopy for Endometriosis. Things have been a bit up and down, I felt better for about 10 months, after that I started to get symptoms again, painful sex and bowel movements and heavy periods, and it was just as painful. I went back to my gynaecologist and he said it does come back and he can't operate on me every year, which is fair enough, I get that. So he told me to have a healthy diet and put me on permanent Movicol long term, as my bowel wasn't great and he said it may ease my symptoms. Lately I've been having a dull ache and stabbing pain in my right side, they thought it was appendicitis at first, but after having an ultrasound he seemed to think it was more than likely my endometriosis returning.
His words were "Once you have it you have it." Even though in my heart I knew that, and I'm fully aware it can keep coming back but you know when someone says it to your face it's that harder of a blow? I feel like I'm stuck in a place of just dealing with it, and even though I have my partner and family who are always there for me, mentally I feel so alone🙁. Can anyone else relate? I'd really like some advice, I just feel so deflated.
Much Love,
Laura xx
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lou_laur96
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I had a laparoscopy, he said they'd remove endo if they found it which they did on my left side, I had a mirena coil fitted at the same time because he thought it would help the heaviness of my periods x
I think I’d have felt the same, the remark was a bit too blasé.
Have you considered a second opinion? There seem to be varying degrees of competency dealing with going by people’s experiences, not just on the forum. Is he an endo specialist?
I know, to be honest I think he was getting straight to the point but sometimes there's better ways. I have got an endo specialist, he wasn't who did my ultrasound as far as I'm aware he was a doctor. Even though my specialist is very good and he has been great with me and did my surgery, last time I saw him he was in the mind set of its going to come back and I can't keep operating. So he just focused on my diet and weight, and getting my bowel more regular. Which I understand those things have an impact to your health but it's not completely to blame, I've lost weight since then and I'm not imaging the pain if you get me x
I'm sorry to hear that! No I haven't, to be honest I had a nightmare with my gp, on several occasions they wouldn't listen about my pain, got told I was exaggerating and even got laughed at, was only when I put my foot down I was reffered. My surgeon basically just said my bowel was really full, he just said it was pretty bad and that I needed to be on meds long term to help. My weight loss wasn't all of a sudden or drastic it was just diet and exercise x
Unfortunately the GP thing is common, I lost track of the times last year. Haven’t been able to get an answer as to why they didn’t believe it, saw different ones as well as my own.
Constipation causes horrendous pain, I try to leave the drink out some days, but suffer the following evening.
I can sympathise with that, I saw a lot of different ones too and it was the same story with every one. One GP openly said she wouldn't recommend referring me, and that's when I put my foot down and told her it's not her decision to make.
It really does, I've been doubled over in pain because of it, the bloating can be horrendous too. I hope you're as well as you can be x
I 100% relate! I have had 6 ops in 5 years including a hysterectomy and my ovaries removed and still no let up from the pain. I cannot even remember the last pain-free day I had. My consultant said he can’t/won’t operate on me anymore at all so basically I just have to learn to live with it. Like you, my husband and family are very caring and understanding but I still feel very alone and isolated as I don’t want to drag everyone down into my depression. I have had to give up work because of the pain and I have been turned down for benefits so I’m really struggling with everything at the moment. It just seems to be one bad thing after another, can’t catch a break. I totally get why you’re feeling deflated, it’s such a hard, debilitating disease to suffer with xx
Oh my I'm so sorry for you🙁🙁. You're so brave and strong! And lucky to have such great people around you, we both are. I agree, and you dont want to live your life under constant stress and pain meds and it's the worst because as unrealistic as it may sound to an outsider you just want to go to someone and for them to give you the answers, and to feel better. But unfortunately we don't live in a ideal world. We can only hope our struggles shape us into the person we are, I'm here if you ever need to chat or lean on someone, don't feel like you're alone xx
That is so lovely of you, thank you. Same to you...if you need a chat I am always here too. It was bad enough when my consultant said he can no longer help me let alone following it up with.... the pain might be in my head and likened it to when someone loses their leg and still get fantom pains. What an absolute insult!! Made me feel so stupid and unimportant. Its not like i’m a wimp complaining of something small and silly! I was so embarrassed and devastated, if only he could feel our pains even for an hour! xx
Thanks you so much. How dare he! What an absolute idiot and an awful thing to say to someone. Don't ever be embarrassed only you know how your own body feels, if you feel the pain it's there! I really hope things get easier for you in time Xx
I said to him if its supposedly all in my head, how come on the rare occasions that i manage to go to sleep, i am woken up by the pain?!
I’m worried for my mental health now I’ve been told i’ve got this pain forever, with no cure and the consultant no longer willing to investigate or help me.
I feel very let down and gutted by it all. I hope you have better luck than me and that you can be one of the lucky ones that gets some sort of support and relief from this disease x
Exactly! There's nothing worse than someone dulling down the pain you're in or making you feel crazy like it's not even there. I went through the same thing with my gp, I literally sat there and said I cry on the toilet it's that painful and sharp, and I said it feels like someone is twisting my insides when I have my period, and she just sniggered and said "it's normal".
Don't be worried about speaking to someone if you're worried about your mental health, I know from experience it can be a great tool and there's some lovely people out there. I'll keep you in my thoughts, thanks sweet xx
My gp has put me forward for counselling so im sure that’ll help me. I dont see how they can just brush it off as normal, when it causes me to faint and vomit
I got told the same by one consultant. He said "had i ever considered that it might be psychological". That really annoyed me. Another doctor, who was telling me that nothing showed on scan and that bloods were OK actually laughed in my face when i disagreed and said that I just know i am dealing with something not normal. That was it for me. I knew I was alone in this and if i wanted something I'd have to ignore the snide remarks and ignorance they seem to have and just persevere. I got there in the end because they diagnosed Endometriosis 5 years later. ><
They make you feel like you are wasting their time, i hate it. I always try and avoid going where ever possible and only go if i really have no other choice and they still dismiss me. But to say they can no longer do anything to help me or that they aren’t willing to investigate my pain any further is heart breaking. It’s like they just don’t care and i’m just left to suffer in pain for the rest of my life (I’m only 33!) X
You won't suffer for the rest of your life, you'll find relief soon. Just need to hang in there. 💞
Are you on any kind of eliminating diet? Endo diet? Anti-inflammatory? Those will help tremendously. Many women have successfully controlled and even eliminated their endo this way. It's what i have chosen to do and I am starting to see some improvement although little at this stage, it's still better than nothing. It's early days yet.
There is hope yet, please don't think there isn't. I know when you're fighting this pain, giving up can be the easiest thing to do but you're not alone. Ignore those doctors, they can't treat you because they really can't. They are seriously ignorant when it comes to this condition. I found out the hard way.
Thank you for your kind words of support, they really do help. Yes i am trying an endo diet. Ive also tried holistic treatments, cbd products, pain relief, tens machine etc im hoping I’ll find something that works soon x
And you will. What you are doing is great. Keep at it, I am sure you'll find something that works for you. We women are resilient. We'll find a way in the end. Not called Endo warriors for nothing! 😁
Have a great night. I am off to prop myself up with cushions to try and get comfortable so i can prepare for my insomnia! lol This pain is the worst come bed time.
What benefits did you apply for? Do a search for work and benefits, very useful info. Have you appealed?
With someone else on disability/esa I get a copy of the relevant medical info and give them this and ask them to sign a receipt. Hasn’t failed so far. The last disability is for ten years. It’s not for endo though. But this is debilitating and they need a shove to recognise it.
Yes i’m in the process of appealing. I have applied for ESA, PIP and Universal Credit. I have been accepted for esa but that’s very low and isn’t enough to cover my bills.
What do you mean when you say you get a copy of the info and get them to sign a receipt? Who does? Sorry, if that’s a stupid question but these applications are so confusing. I appreciate any info anyone can give me x
When there’s been an appointment for either go or the person goes to the house I have a wad of hospital letters, X-ray, scan whatever there is. I make a sheet listing what the documents are and ask the person to sign that they’ve been given. If it’s by post with initial form I send signed for and take photos so there is a record. They can’t afterwards say there isn’t enough paperwork. The more you provide the easier it is and give worse case scenario.
Have you spoken to CAB, they are great on these things and can make phone calls on your behalf if needed.
I gave the GP a wad of documents once about a piece of equipment that wasn’t necessarily available, he took one look at the envelope and said yes 🤣
Hi Laura. Was your consultant a gynaecologist or an endo specialist? Are you with a BSGE Centre? Also, I was told at a London hospital that 50% of women with endo will have IBS symptoms associated with it, i. e, the endo is on the bowels, so in effect, it is not real IBS but gives similar symptoms.
An exclusion diet usually works, ie, identify the foods that make you feel unwell and eliminate them. The usual culprits are : gluten, dairy, soya, chocolate (contains both soya and milk), caffeine (very high level of oestrogen), brown rice (irritates the intestines), hot spices, alcool. Eggs sometimes can be a problem. I react to all of the above and I have replaced them with gluten free bread, pasta, cakes, biscuits, flour, oat, almond, coconut milk and cream. Rice, quinoa, potatoes, sweet potatoes gluten free oat are my best friends. I can make whipped cream with chilled coconut cream. I supplement with magnesium glycenate (tiredness), vitamins D, c, iron, B9, B12. There are some good authors who talk about their endo journey, remedies, diet, recipes, like Carolyn Levett 'Recioes & Diet advice for endometriosis', 'Heal endometriosis naturally by Wendy K. Laidlaw. They are support alongside medical help. Take care. x
He was a gynaecologist and surgeon, but as far as I was told he was one of the best and had experience with endometriosis. I'm just at a hospital, and I can go back to my gynaecologist if I needed to, but as I said last time I went back it was just have a healthy diet and take your movicol (which I am doing). So I don't really want to go again as I know what the answers will be😕.
I have heard that it can give some of the same symptoms, and always seem to think it was linked. Thanks so much for all of your help it's very kind of you, I'll look into it and really appreciate it xx
Hi Laura,
I ended up coming across this website after googling other bits online, I feel like this forum could of really helped me a year ago.
I really feel for the hell you’re going through, I also have severe endo and it has changed my life completed.
Rewind 18 months I was pregnant with twins and life was exciting; unfortunately there were complications with my pregnancy and I lost both babies...during the surgery they discovered I have severe endometriosis.
A year of emotional trauma and my husband and I began trying again 8 months ago, so far no luck and my doctor is putting it down to the endo. I have had two pregnancies in my lifetime all very quick, we had only been ‘trying’ for 2 months when I fell pregnant with the twins. The only blessing of this whole scenario is my cycles are like lock work so for around 2 weeks of every month I am in the same agony a lot of the women on here are speaking of but those 2 weeks you’re in pain, over thinking about heaviness of periods and also wondering if I will ever fall pregnant again.
Like you my doctor can only say ‘this is it’ type scenario and I’ve decided I’ll give it another 12 months and have a full hysterectomy because the pain is unbearable but I owe it to myself and my husband to try and conceive again as it was our dream.
I’m so glad I found this page, I have spent nights searching google just to reach out about the whole experience and now living with this condition.
I am so sorry for what you have been through my heart just utterly breaks for you😢. Don't ever forget how strong you are and remember miracles do happen! Don't give up hope.
One thing that always makes me deeply worry is my fertility, we aren't trying right now but in the future we want to and I'm just terrified of running into problems because i just know it's the one thing I truly want. I completely sympathise with the pain, it can almost seem to be constant and I just get to a point where I'm just so tired and sick of the pain, as well as it is exhausting it's so mentally draining and isolating. It's definitely the not knowing and constant what ifs that just drains you completely, you can talk to me anytime you need! I think you're doing amazing you should be so proud🤗 xx
It has made my day seeing this post thank you and likewise in the future if you ever want to reach out when you do start to have a family please message me x
I am curious if you have ever had a colonoscopy? If you are having digestive issues and pain in your lower right side and they thought it might be your appendix, it is worth a trip for a colonoscopy. I am not trying to sound scary. My personal situation/experience has made me more cautious and less apt to just take a doctor's word for things. Please take all of your symptoms seriously, even if a doctor (or several, until you find the right one) doesn't. You know your body better than anyone else.
No I haven't, when I had my operation he didn't find anything sinister just that I needed some help and a healthy diet to help. It has helped since being on the movicol but obviously I still have flare ups of endometriosis pain and I know IBS symptoms can be similar to symptoms of endo so it's a difficult one isn't it really. I'll have a go and cutting certain things out and reading up and see how I fair when it comes to that side of things.
I agree you know your body better than anyone, I'm usually quite laid back but I did get so frustrated in the end of not being took seriously and listened to so I put my foot down with the doctors until they reffered me and only then it was taken seriously. Thank you for your advice x
Hello there.
It's why I gave up the idea of surgery to cure this thing , because there is no cure and everything they suggest just tries to temporary 'cure' it but that doesn't last long and sometimes comes back way worse! I have been told by many consultants that surgery is not for me (4 C-sections so I am maxed out with scar tissue/adhesions already.
I have decided to go down the route of being on an anti-inflammatory diet and gentle exercise i also do regular water fasts and days when all i do is juice. I've only just started but noticing some improvement (although not much) and you're meant to be on it at least a year to start noticing the bigger difference so not there yet. I wouldn't want surgery not only because it wont cure it but also because you risk spreading the cells even more, creating more scar tissue/adhesions lumps etc not to mention the actual risks from the procedure itself etc. No thanks. ><
"once you have it, you have it" is somewhat true if you're trying to tackle it through surgery, coils, pills etc. But i personally believe that your body can heal from anything if you choose the right treatment. Eating the right foods, taking the right vitamins, herbs etc allows your body to do the healing. Your immune system is more than capable of eliminating anything, given the right fuel. Things like water fasts, juice cleansing, Keto diet, Anti- inflammatory diet all help in getting your immune system in tip-top shape thus allowing natural healing to take place. Look up autophagy. So there's hope yet. 💞
It's a long journey with many ups and downs. I too am going though lots of pain and it took them 5 years to diagnose only because I kept on pushing for scans tests etc. I, like you have great kids and a supportive husband/family/friends but I still feel alone. Just feel like i am always in this endo bubble of mine ( it's what i call it). Tend to zone out without realising and don't enjoy many things i used to, seeing my husband enjoy bowling and running around with kids really crushes me, but it is what it is, I guess. Just need to concentrate in getting better, even if that means allowing myself a good cry in bed with my hot water bottle!
I feel deflated often. Can't sleep like i used to. Cant do many things during flare-ups. Feel alone no matter where i go or who i am with. I know how badly it affects your psyche and moods and relationships. You're not alone. Chat anytime. 😊
I'm glad you hear you're feeling some relief if only a little, some is better than nothing😊. I will definitely try modifying my diet and see if it helps me. Thank you for sharing and all of your advice I really appreciate it!
I understand totally about feeling like you zone out, I guess you feel alone because the loved ones around you can try to understand and sympathize with the things you're going through but no one can really understand the isolation and the hurt and frustration, and it just gets lonely at times. I struggle with feeling like a burden to my fiance, we've been together nearly 10 years and obviously I haven't always been this way, and you tell yourself always it's not your fault, and he's brilliant and so supportive, and even though I can't control it, I'm still hard on myself. There's no shame in having a good cry, I actually think it's healthy! You need to allow yourself to accept how you're feeling in order to heal I believe.
Same to you, I'm always here if you need to chat or lean on someone! Thank you for your kind words and I wish you well too, big hugs xx
Appreciate it. 💕
We're all in this together. I am glad I found this place because for once I feel like i 'belong' somewhere, even if virtually. It's comforting to find people who understand, and who are there for you and you for them. The understanding of how it feels is what we really lack in real life and being here has made it one less burden.
This book has helped me and many women out there. I hope it helps you too.
Recipes & Diet Advice for Endometriosis: by Carolyn Levett.
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Emotionally exhausted
Coping with emotional side of diagnosis
Endometriosis and Emotional
Feeling Emotional
Emotional Rollercoaster
