I got fobbed off for years at the GP telling me I had IBS, but once I got diagnosed with severe endo years later and had it operated on (I had 2 operations during the course of a year with goserelin injections for a few months in-between) my IBS symptoms dramatically reduced. The operation included a lot of things but also my bowel which was very stuck down/stuck to everything else. I don't think I ever had IBS, I think any symptoms the GP attributed to it were 100% down to endo. It's ridiculous how difficult it is to get diagnosed. My periods ruled my life for the best part of 20 years and it wasn't until I couldn't conceive that anyone was willing to look into it at all!
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I've had awful digestion/reflux and IBS this year too. It's become a bit of a vicious cycle for me because I'm in pain and stressed which makes the digestion and stomach issues even worse.
It sounds awful but it's so comforting to read about other people's similar experiences here. Sometimes it really feels like you're the only person in the world going through this.
It sounds awful but it's so comforting to read about other people's similar experiences here. Sometimes it really feels like you're the only person in the world going through this.
I was told I have adenomyosis back in July. I’m sure I’ve been suffering since I was 11 and first started my periods. For the last 2 years I’ve suffered with chronic bloating that never goes down day and night. My bowel issues are awful and they’ve led to deep anal fissures (cuts) as I’m usually constipated. I was told I’m not bloated by a rude male doctor who made that judgement looking at me fully clothed with an oversized t shirt on. I’m really struggling with the uncomfortable fullness, bowel issues and pain from the fissures. It never ends and I’m so ready to give up! The doctors don’t care and I’m drained mentally and physically. My quality of life has been majorly reduced by all these issues it’s devastating.
I had my uterus removed but I still suffer from severe constipation. The only thing which works for me is aloe Vera capsules. I take one or two with me evening meal once a week (when I have nothing planned the day after).
I take this brand:
I try not to take it too often but it is miraculous.
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Jumping back into this thread. I now have a confirmed diagnosis of Adenomyosis. I still suspect Endo too but obviously can't confirm that until surgery.
Has anyone here had surgery or successful treatment of Adeno? I know they say the "cure" for it is a hysterectomy. I'm still young but I don't want children so I am starting to consider it. The pain is really affecting my quality of life and causing bad depression and anxiety. I've also become quite useless at work (usually have such low energy and bad pain) and I have no idea how to explain this to them (all of my supervisors and managers are men)
Has anyone here had surgery or successful treatment of Adeno? I know they say the "cure" for it is a hysterectomy. I'm still young but I don't want children so I am starting to consider it. The pain is really affecting my quality of life and causing bad depression and anxiety. I've also become quite useless at work (usually have such low energy and bad pain) and I have no idea how to explain this to them (all of my supervisors and managers are men)
I had to have a hysterectomy for my endo and ando.
Do you mind me asking what your recovery was like? Did you have to take HRT? Only answer if you feel comfortable obviously!
What advice are your consultants/gynaes giving regarding having children and general fertility?
Feeling really stressed and upset virtually everyday since I’ve turned 30. Had laproscopy 2018 which diagnosed endometriosis, had around 3 years pain free before it came back with a vengeance. Referred back for another laproscopy in 2021 but still awaiting surgery. Ever since I was diagnosed I was told that if I seriously wanted children then I should try sooner rather than later and especially before I turn 30. Turned 30 a few months ago, feel like there’s a ticking clock above my head
, not in a settled relationship to even have children although I do want them. Surgery is due in the next 6 months and my gynae mentioned again at my latest appointment that I was risking not having children.
Feeling really stressed and upset virtually everyday since I’ve turned 30. Had laproscopy 2018 which diagnosed endometriosis, had around 3 years pain free before it came back with a vengeance. Referred back for another laproscopy in 2021 but still awaiting surgery. Ever since I was diagnosed I was told that if I seriously wanted children then I should try sooner rather than later and especially before I turn 30. Turned 30 a few months ago, feel like there’s a ticking clock above my head
, not in a settled relationship to even have children although I do want them. Surgery is due in the next 6 months and my gynae mentioned again at my latest appointment that I was risking not having children. 
I would explore alternatives before getting a hysterectomy if possible! my Mum had one in her late 30s and although she'd long since had children and didn't want anymore it really changed her and messed her up - she really didn't want it but was advised it was her only option. could you please tell me what symptoms you are having with ando?
Due to my age, I kept my ovaries but had everything else removed. I had laparoscopic and vaginal surgery. Recovery went well, first 6 weeks were hard though rest was okay, just took things slowly.
I have children though, was lucky enough to get pregnant after surgery for endo removal and I don’t know how I’d have felt about having the hysterectomy if I didn’t have kids.
Do you have a partner or family you can talk to?
Unfortunately I'm going through a divorce and my family aren't very understanding. Not their fault, they just aren't very aware of Endo and Adeno.
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The biggest symptom is chronic pelvic pain. Most of the time it's like a very heavy ache, feels like I'm carrying a football around in my pelvis, and sometimes it's a stabbing pain on one or both sides (I've been checked for cysts and no signs). I often have a low back ache and a "tingly" legs feeling and a lot of fatigue. Also have pain during and/or after intercourse (I'm looking into pelvic floor therapy to hopefully ease this). The only relief I ever get is from a hot bath or hot water bottle. pain don't seem to touch it.I would explore alternatives before getting a hysterectomy if possible! my Mum had one in her late 30s and although she'd long since had children and didn't want anymore it really changed her and messed her up - she really didn't want it but was advised it was her only option. could you please tell me what symptoms you are having with ando?
ETA I'm also on the pill to try and manage symptoms to no avail!
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I had some non hysterectomy surgical relief for adeno (tissue had basically folded my womb in half so it was cut free but left in) and then hormonal treatment helped to keep it under control. I’ve recently had excision and just had an almost pain free period. Always ask for a second opinion if you feel you’re not getting the help you need.
Hi all - I think I’ve got endometriosis but won’t know for definite until my hospital appointment but I’m currently just on a waiting list. I’m just about to start on the progestogen only pill to see if it helps with the painful and heavy periods. I just hope any kind of side effects aren’t too severe or don’t last long as i feel like there’s enough wrong with me already 
i do have typical PCOS symptoms too but apparently don’t have that.
Just wondered if anyone has managed their symptoms with the pill (POP pill specifically as I’m too fat for combined!)
i do have typical PCOS symptoms too but apparently don’t have that.Just wondered if anyone has managed their symptoms with the pill (POP pill specifically as I’m too fat for combined!)
Hey all, I have suspected endo. Had some really extreme periods, plus bowel and bladder issues which I suspect is linked. I was originally referred to gynaecology in 2019 for unexplained bleeding after sex plus in between periods, and tbh the doctor done a smear, STI check, felt about and said I probably have endo and that a mirena coil would take my symptoms away. At that time I didn’t think to push it to get a proper diagnosis and being honest the mirena coil has taken everything away, periods and all the horrible symptoms.. anyway, I get married next year and would like to TTC after. I’m thinking about getting my coil out to try and understand my cycle a bit better ahead of TTC and I suppose go to the doctors to investigate if I’m suffering. Not sure what I’m looking for in terms of advice but has anyone on here suffered with trying for a baby or any success stories? Do you think it’s a good idea to come off contraception and get used to my natural cycle so I have all the info? For reference I’m 31, have even on contraception in various forms since I was 17
Personally I think if you want to TTC you should remove the mirena and get a proper investigation done with the guidance of an obstetrician/gynaecologist as you need to be safe and well as can be. Not to mention informed x
I’m having an excision of an endometrioma in three weeks time. It’s in a really weird place, as it’s just below my cesearean scar, I can physically feel it.
The hospital has so far, given me mixed messages as to how much recovery time/sick leave I will need. I’ve so far had three weeks-ish, to as little as 48 hours!
I was wondering if anyone has had similar surgery and how long it took you recover/go back to work?
I’m a physio, so my job is very physical! I’ve been told that on the day I will be given a sick note - but no idea for how long?!
I’d hugely appreciate if anyone has had similar experiences, and advice to share.
Thank you
The hospital has so far, given me mixed messages as to how much recovery time/sick leave I will need. I’ve so far had three weeks-ish, to as little as 48 hours!
I was wondering if anyone has had similar surgery and how long it took you recover/go back to work?
I’m a physio, so my job is very physical! I’ve been told that on the day I will be given a sick note - but no idea for how long?!
I’d hugely appreciate if anyone has had similar experiences, and advice to share.
Thank you
I went back to work after a week off following laparoscopic surgeries - I had a few endometriomas removed (but they were all on and in my ovaries), and they removed a lot of scar tissue/separated various things that had stuck together in thereI’m having an excision of an endometrioma in three weeks time. It’s in a really weird place, as it’s just below my cesearean scar, I can physically feel it.
The hospital has so far, given me mixed messages as to how much recovery time/sick leave I will need. I’ve so far had three weeks-ish, to as little as 48 hours!
I was wondering if anyone has had similar surgery and how long it took you recover/go back to work?
I’m a physio, so my job is very physical! I’ve been told that on the day I will be given a sick note - but no idea for how long?!
I’d hugely appreciate if anyone has had similar experiences, and advice to share.
Thank you
My job is sitting at a desk though so not physical at all! One of my operations was more extensive than the other one and that took longer to feel better from but I just tried to take it easy and keep up with paracetamol and ibuprofen regularly. I hope you're on the mend soon!48 hours is very unrealistic!!! Because you have scar tissue that might affect healing I’d say you want to prepare for a couple of weeks.I’m having an excision of an endometrioma in three weeks time. It’s in a really weird place, as it’s just below my cesearean scar, I can physically feel it.
The hospital has so far, given me mixed messages as to how much recovery time/sick leave I will need. I’ve so far had three weeks-ish, to as little as 48 hours!
I was wondering if anyone has had similar surgery and how long it took you recover/go back to work?
I’m a physio, so my job is very physical! I’ve been told that on the day I will be given a sick note - but no idea for how long?!
I’d hugely appreciate if anyone has had similar experiences, and advice to share.
Thank you
I had two areas of endometrial adhesions removed in 2021. I was signed off for 2 weeks by the surgeon, and then I ended up needing a further week off as my stitches got infected. I then returned to work on slightly reduced hours for a further fortnight. I really hope it goes well for you and provides some relief!I’m having an excision of an endometrioma in three weeks time. It’s in a really weird place, as it’s just below my cesearean scar, I can physically feel it.
The hospital has so far, given me mixed messages as to how much recovery time/sick leave I will need. I’ve so far had three weeks-ish, to as little as 48 hours!
I was wondering if anyone has had similar surgery and how long it took you recover/go back to work?
I’m a physio, so my job is very physical! I’ve been told that on the day I will be given a sick note - but no idea for how long?!
I’d hugely appreciate if anyone has had similar experiences, and advice to share.
Thank you
Definitely not 48 hours! Like PP, mine was large & removed from my ovary during my laparoscopy. It was 2 weeks before I started to feel ok but couldn't lift anything heavy or do anything that would be too harsh on my core. My c section 2 months ago was a breeze compared to it. For your line of work I'd say minimum 2 weeks, maybe more since it'sscar tissue. Wishing you a speedy recovery!