Learning to live with endo

Heya. My names Charlie. I was diagnosed with Endo last Aug 2016 by lap and had some bits burnt away. Following that I've had the marina coil (worst experience of my life!) also been on decapeptyl injections for 2 months with no hormone replacement as it made things so worse.

Bit of back ground story. All usual Endo symptoms but one major one that I can't do anything about. Had pain full bowel movements for years. After it was happening every day I went to the doctos saying I had period cramps when I was doing a poo. Sorry for the tmi! Anyways fast forward 6 years and I'm STILL having pains even after all the things they have tried. Its the most painful thing ever and in my opinion i believe my bowels are fused to something causeing pain when they are full or moveing. On the pain scale its between 9-10. I'm totally lost at the moment. My pain meds are not working - I'm taking dihidrocodien, tramadol and lidocaine patches. Pretty much the injections took away the mild symptoms that didn't bother me however I'm still suffering bowel pains every day and it is making my life miserable. I don't have a social life I live in the bath or in pj's with a hot water bottle. I've stopped eating because when my bowels are not moving I get the most comfort. Due to this I weigh 6 stone 10 and can not but any weight not matter how much I eat because eating like a normal person just causes me to have so much pain.

I have a follow up appointment with my consultant in February but they have said if I still have pain this can't be Endo but I know it is. I have been through every test on my bowels and the woman doing my colonoscopy said my bowels were healthy apart from having a torturous colon which in recently found out Endo sufferers can also have. I don't even know what I hope to get out of writing this. I just feel so alone and lost and have no idea how to control the pain and feel like I'm not dealing with this well at all. What happens after the injections don't work. I'm 27 and my biggest wish is that they would just take away my bowels and womb. If you've read this thanks very much.

14 Replies

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  • Are you being treated at a BSGE specialist centre?

    Your symptoms sound severe. It's crucial that you are treated properly because it sounds like you may have bowel involvement in your endometriosis.

    I'm really sorry for what you are going through but don't give up hope. The right treatment is out there for you but I must say it doesn't sound like your treatment has been fantastic so far :( x

  • Hi janine33. Thanks for your reply. I am under their care and it's frustrating because they are trying their best but it's only after I really put my foot down the last time that I was offered the injections.

    I'm not discrediting the surgeon who did my lap but Endo is so complex as is the human body so if something wasn't seen it's not because he's not adequate to do the job it just these things happen. I think the next thing ill suggest is to be put forward for the surgery where they can look more in depth at my bowels (can't remember the techinal name).

    I started this journey with most of the health professionals I came into contact with over the last 6 years thinking it was in my head after all bowel tests and highest dose of steroids did he haw. It was only after my diagnosis I started getting proper help. The annoying thing is the first few days after having the injection everything is more settled where i can easily manage my pain more better and the all important bowel movements don't feel like torture.

    I hope all is well and you have had lovely start to the year. I got my injection at the start of the month so it was all going nice until it took a turn for the worst over the last couple of days. Xx

  • if the endo was burnt away rather than excised (cut out) are you positive you're being seen by a bsge specialist surgeon, as they don't generally carry out ablation/laser treatment.

    You can also ask to be referred to a different bsge centre if you don't feel you're getting the treatment you need at the one you're at.

    Hope thing get better soon.

  • Thanks for your reply. That's a really interesting point I'll double check with them. I'm sure they said lazered but maybe they did cut it out. I didn't cope well immediately after the lap as didn't really feel happy with the explanation although it was pretty cool to see the pics of my body they take. It was nice to be able to see what is making my life hell. But their view is that they have taken away stuff so that should mean no more pain or symptoms. I just have to stay strong and keep fighting. Xx

  • Sorry to hear that you're feeling so bad.

    Keep fighting for the help that you need to help you lead a normal life. Never give up hope that one day you will find something uhh works for you.

    I fully sympathise with you. We shouldn't have to work so hard to get the help we need to gain a better quality of life. When endo symptoms are bad we aren't living - just existing.

    Stay strong and take care of yourself 😘

  • Hey lovely,

    Sorry i dont have a great deal of advice. I have really similar symptoms however am still waiting for a diagnosis. I completely get how crap you feel right now.

    Just wanted to say thank im thinking of you and hope you feel better soon. Take care :) x

  • I've had some relief from following the endometriosis diet. I'm not saying it's an easy fix but it definitely seems to be helping me. I also take turmeric and omega 3 supplements and have felt better since I started with those.

    I am gluten free, have as little dairy as possible, eat lots of fresh fish, fruit and vegetables and avoid refined sugar. It definitely seems to be helping and I can tell the difference in how I feel if I have a treat day and eat something which is not in the diet X

  • Heya thanks for taking the time to reply. I did do some research into foods to avoid and ended up cutting caffeine out my diet and pretty much most dairy and all read meats. I went gluten free too and didn't see much change so that's the only thing I've reverted back to. The love for bread was just too strong lol. I did find fish oils helped more and having a smoothie a day with as much fruit and veg in it as possible with added fibre to bulk it out. I didn't notice if we did end up having a take away I would suffer more the next day so cut them right down too. Hope the change in diet continues to work for you. I have read a lot of woman having great success with just diet change alone so hope that it keeps helping! ☺ xx

  • Hi lovely firstly I'm so sorry to hear what your going through, it really is awful. I am 27 too and gor diagnosed in August 2016 after a long list of doctors saying I have IBS and bladder symptoms have nothing to do with possible endometriosis and constantly being fobbed off until I got my first smear test at 25 which was so painful I nearly kicked the nurse in the face oops and she said I needed to be taken seriously by doctors and stood up for me. It still took a good year and a half to get seen and even then my doctor told me ' well your not trying for a baby right now are you so get a lap in future if you don't conceive as no point in it now but I insisted. Don't feel alone in your experiences, you know your body. Ofcourse your not a doctor but you have to trust yourself and not stop pushing until you get the treatment you need. I would definately insist this needs to be dealt with immediately as your weight loss will cause a lot more trouble for your body. I understand as I'm naturally very slim and since my lap have been ill on and off and have lost weight too. I don't have as much trouble as you with bowels but my main concern is bladder pain and I know I don't drink as much as I should to minimise needing to pee but we are only making things worse in the long term as eating and drinking can't be avoided so if these things are compromised it is an emergency. Perhaps try cal shakes which you can get prescribed by GP or may be even able to purchase in chemist which are high calorie shakes. These may go through you easier than solids but could help keep your weight off. If you need to vent don't hesitate to private mail me, we have to support eachother x

  • Heya and thanks so much for your message. It's been overwhelming seeing I even had one reply to my post let alone a few. It brought a wee tear to my eye reading all these comments. I don't understand why so many of us are still suffering like this. It sounds like you have had a rough time aswell. I'm so glad you finally got a diagnosis. It's bittersweet but I believe since getting my diagnosis it's given me a few good days which is what I need to focus on more. I did have some complan shakes but haven't asked for any more but I think I will do that. Went to my gp today and was basically told to suck it up. Have they offered you out any other treatments since your lap if you don't mind me asking? Thank you again for your kind words. It means a lot. Xx

  • Hi! I would check if you are being seen at a BSGE centre or in general gynaecology. Your symptoms sound severe and if you are trying to manage pain by not eating that is a big problem sweetie. I suffered bowel problems and period pain for decades. I was pushed between gynaecologists and gastroenterologists for 30 years. I had barium studies, scans, a laparoscopy (where they found adhesions and didn't investigate further). The combined pill helped whilst I was allowed to take it. Finally at 50 I demanded a hysterectomy. Only then was stage 4 endo discovered and the fact that my womb was stuck to my sigmoid colon, left pelvic wall and ureter. My severe pain had been caused by endo, adenomyosis, a chocolate cyst in my left ovary and the adhesions. I had been suffering from partial bowel obstruction for years. DO NOT BE FOBBED OFF. At 27 you are too young to be medicating so heavily on major drugs. I was 50 and close to menopause. Lasering is not enough to treat endometriosis. There is a technique called total peritoneal excision. Please check out the postings by a lady named Lindle. She has a wealth of information on severe endo. Good luck x

  • Heya thanks for taking the time to reply. Wow I can't believe you had to go all that time to find out all of that. How are your symptoms now? Did having tje hysterectomy help and how did you survive all the time in pain? I really struggle to see myself doing anything thing the future. Also if you don't mind me asking was your bowel obstruction ever found on any scans? I've had x rays, MRI'S and ultra sounds and they haven't picked anything up ever although that's something that's been mentioned to me.

    When i got my colonoscopy the doc said there was some form adhesion around my apendix area (funnily enough a problem area for intense pain) which she couldn't really explain and sent me for an ultra sound which showed nothing which I was fully expecting. Sneaky Endo! I really think on the other side that's where they will find something not so pleasant. It is convincing them to take another deeper look.

    I am definitely under the care of the BSGE people and again i know they are trying their best and I know I frustrate them but that's because this is no where near normal. I joke that if I was a dog I would have been put down years ago and I say joke but it's not even funny to have that kinna train of thought.

    Your a very strong lady to have gone through all of that and thanks for taking the time to read my post and reply. I will have a look at the woman you mentioned. I am definitely not in a good place and have lost all my trust in support from health professionals who really are the only ones with any power to help. Xx

  • Hi! Scans showed nothing! In 1986 a gastro-enterologist diagnosed an enlarged area of my ileocaecal gut (near the appendix funnily enough...). That was dismissed as being a structural abnormality. I never had an MRI scan.

    Post-hysterectomy my symptoms are much better. I was 51 when I had my hysterectomy and BSO. I am on oestrogen only HRT and testosterone (yes really! It's great!). Due to my hysterectomy being carried out by a general gynae, I did not have it excised from my colon. I am hoping that residual endo will die back. Oestrogen can feed it. When I finally got to see the BSGE consultant he booked an MRI scan to see what is left and where. I am waiting to go into an 'open' MRI scanner due to me being very claustrophobic.

    Again I will say that you would be too young to have your womb and ovaries removed for a non-life threatening disease. You need your oestrogen until you reach the average age for menopause (51). It was different for me at my age and with no diagnosis of any disease. Even so it was a tough process.

    There is a procedure called total peritoneal excision which treats the endo and adhesions as the bad guys and seeks to remove it whilst preserving healthy ovaries. Healthy ovaries are good! Not only do they produce oestrogen and progesterone, they produce testosterone. Had I known about my endo and had the money I should have gone for that. My right ovary was healthy and ideally would still be in place....Never mind. I am pain free after years of severe pain and over-medicating on opiates and NSAIDS. My tummy had permanent scorch marks on it from the round the clock hot water bottles. I survived the pain because I had to. In the absence of any diagnosis or cause, I believed that all women get this pain and that I had to be stoical and 'soldier on.'

    Incidentally, if endo is causing partial bowel obstruction you should consider eating softer or pureed foods. I was severely constipated and thought that I needed to eat more fibre and took psyllium husk capsules. WRONG! I just had too much bulk to squeeze through...severe pain. Also, I took and sometimes still do take Co-ton A 00 (without goldenseal) tablets - herbal stuff. Take with food. They encourage the gut to work properly. They do not relax the gut like senna or act as osmotic laxatives. They can be taken for a bit longer than regular laxatives. They may help you. Suggest you google them. Everything from the doctor/hospital was ineffective. Also, try small quantities of prune juice. Please eat sweetheart!

    Hope this is helpful. You are a young woman and your needs are different from mine so bear that in mind.

    Hugs x

  • I have severe stage 4 endo, The POD is full, it's all over my bladder, anus, rectum, uterus cervix and all over my bowel. I had an MRI as my first lap suggested I may have a problem with my sigmoid, but a colposcopy showed nothing so they did an MRI - and thank goodness they did.

    The endo has tethered my bowel twice, causing it to double back on itself - every bowel movement is awkward and on my period it is excruciating, knocking me to the floor with pain. For them to tel, you it's not possible to be endo is ridiculous - your symptoms are very similar to mine.

    Lindle is a fab lady on here - she put me in touch with a FB group called Endorevisited UK Support group where I learned that all endo of the bowel should be properly excised with a BSGE registered surgeon - I found the perfect surgeon in Birmingham and I am grateful for the group helping me find the right way forward.

    Ablation / laser treatment is not a correct method to this type of Endo - it should be cut out with scissors with a specialist trained surgeon so do your homework and find a fab surgeon - your GP can refer you to the surgeon of your choice. I am waiting for a space in my diary to get my surgery now - 2017 is the year I am getting rid of it all.

    Meanwhile, I too live in baths to get in control of the pain, and hot water bottles, heat pads and tens machines help make life bearable. I take peppermint oil capsules to help disperse wind and a sachet of Laxido every day to keep my stools soft so I can eat and poo easier. Plenty of fruit smoothies are good too.

    Please feel free to ask me any questions at all.

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