I had investigative laparoscopy surgery back in October this year. I finally had my endometriosis diagnosed (it's only taken 18 years, for someone to truly listen), it was removed along with scarring and I had a mirena coil fitted.
The validation I had after the surgery was unlike anything else. I have had the majority of doctors tell me the pain was in my head or it was simply my anxiety. So knowing the pain, extreme bleeding and nausea was all due to it. I knew there was a deeper issue but was constantly fobbed off, thrown birth control or ultrasound scans didn't show anything (which my consultant said scans rarely do show endo).
The validation has somewhat worn off a bit now and I think I've entered the mad stage. I'm not sure if anyone else feels this way but I have had to constantly advocate for myself in terms of health and I fear this is only the beginning. It is SO draining when you are already feeling exhausted and still have to fight for yourself. It is obviously fantastic the surgery went so well and I am so pleased to have a diagnosis. But I'm now wondering about the future, in terms of it coming back will I expect similar symptoms to before? Fertility is another area that concerns me as I'd love to have children. I seem to have more questions now than I did before and it feels quite daunting.
Since the operation I have suffered with a bladder, tract and kidney infection and Enterococcus faecium. Tried all sorts of antibiotics but this is yet to be cleared up, my doctors, 111 and the hospital are all leading me round in circles which is really effecting my mental health after the operation itself. Did anyone else have something similar to them following surgery at all?
When I went for my follow up appointment after the operation he noted that I had a build up of fluid around my left ovary/ tube. I wondered if anyone else has had this experience? He said to not worry but of course I am concerned as I have had pain on that side. He himself took a photo as he said it was "unusual". I'm not sure why he didn't do anything about it in the op as I signed extra permissions etc. He also noted my rectum seemed quite backed up etc.
Because of the issues post op my consultant has now referred me on to an endo urology specialist. So I am awaiting that but I feel a bit lost in the meantime. Once again feel dismissed by most health providers (a lot of whom seemingly don't know anything about the condition). My main consultant has been one of the best people I have ever dealt with and has advocated for me so much throughout this whole experience. Didn't even question me at any stage and just believed my pain from our first meeting. He even prescribed stronger painkillers which no other medical professional ever has.
Prior to surgery I took a strong dose of Tranxemic Acid to try and reduce bleeding on my period (I was still quite heavy), I am alway anaemic so hoping this may improve now I have the coil fitted. I'm hoping my body is liking it as I haven't really had much bleeding after it was fitted. I was reluctant to get it fitted as lots of other hormonal birth control hasn't worked for me in the past but so far, so good. Have others found it reduces the rate at which the endo grows back? As that was my main reason for agreeing to having it fitted.
I'd really love to chat to some others who've experienced any of the above as I don't have any friends with the condition or who really understand what I've been through.
I can elaborate more on my prior experience too (symptoms started at age 11 and I was diagnosed age 29) but feel like I've written an essay so far so my apologies!
Hope to speak with some of you soon
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Purple_Dinosaur
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Hello, thanks for sharing your story. Sorry to hear that you went through what you did. It took the doctors 8 years to discover my endometriosis so I know the waiting feeling! I've had two laparoscopy surgeries and touch wood I didn't have no complications.
I was on the Mirena coil for 5 years so no pain or bleeding all that time and also the endo didn't grow and was managed. 3 years ago I took the coil out as we are trying for a baby and my symptoms got worse about 3/4months later after having it removed and developed Adenomyosis on top of endo and it's been a living hell since then.
The only option they have given me is to obviously go back on contraception pill/ injection or have my uterus removed which isn't an option until I have a baby. It's been a difficult 2 years with constantly being in pain every month but I have to manage it until I fall pregnant. I am on the strongest dose of pain killers so there's not much they can do for me, if I go hospital the only thing I get is morphine.
When they did my 2nd op they found some fluid around my pelvis but nothing too concerning.
I know the feeling of waiting and feeling like no one is listening to you because I went through it myself and it messes you up mentally. It's just a shame it doesn't get more recognition and I think people need to be more educated about it as it's become more common now.
If you have any specific questions you want to ask me, feel free to drop me a message and il happily reply
Thanks for replying 🙂 waiting is really difficult isn't it. Interesting to hear about your experience with the Mirena thanks for sharing. So far it seems to be working okay for me so hoping I can continue to have it for a while.
Sorry things have worsened for you since coming off of it. Will they try another surgery to try and help fall pregnant or is that not really an option? I know my consultant said that was a possibility for me in the future if I'm struggling to conceive and want to. How does Adenomyosis differ to Endo? Sorry that you have developed that on top.
Can I ask what pain killers they have given you? Interesting when I had my appendix taken out they found fluid and blood on my pelvis but couldn't give an explanation at all!
It really does, I honestly feel like I'm going mad sometimes. I agree, so many people have it. It astonishes me that more doctors haven't even heard of it.
Hey, so sorry to hear about the pain and trauma you’ve suffered with your health.
Endo is so unique in terms of everyone’s symptoms, regardless of which stage everyone is on.
Im on stage 4 and have been for a couple of years. The pain and bleeding has been horrendous. I’ve had 3 laparoscopy surgeries, last one was only last month and still recovering.
I would advise you to do more research on Endo. Check online, check on Instagram as there a tons of info and support out there.
Do some research on what food might help you in order reduce certain symptoms like reduce gluten, have more probiotics/prebiotics.
Have more vitamins like tumeric tablets, cod liver and evening primrose oil tablets.
It’s taken me years to find what works for me and what doesn’t, for example not being on any hormone related medication has been GREAT! Not just for bleeding but mentally too.
This disease affects you both physically and mentally. Not everyone will see it or understand it.
I’ve always been worried about fertility. I know a few people who have had endo and still had babies and vice versa so I am hopeful.
That being said, everyone’s situation is different. Speak to your doctor and see what your chances are and if they checked how healthy your ovaries, fallopian tubes are etc.
With my most recent surgery they actually didn’t find any endo but still doesn’t explain the reason for pains. For me now, I’m accepting that I’ve got this illness whether my symptoms worsens or remains stable, I will just get on with my day with/without pain relief.
If you’re under a specialist at a hospital, see if they can provide you with the endo nurse contact numbers for emergencies.
I have all the contact numbers for both emergencies and non-emergencies and the Endo team have been great over the years and so supportive. Not only do they ask about how you’re managing pains etc, but they ask about your mental health and how work is affecting you etc.
Sorry if the information I’ve given hasn’t been as helpful but it’s hard with different symptoms. But I do hope you find a way to manage your pains and symptoms and that doctors give you the answers you’re looking for.
Hope you recovery continues to go okay. Have your surgeries been close together?
Instagram definitely seems like a great place to find out more information and just more support in general. It's been quite overwhelming to be honest but I definitely find knowing more info helps settle my mind.
Before the op I had actually started to cut down on my gluten consumption and I think that's helped so I'm going to try and continue with that if I can. Do you recommend any probiotics/prebiotics in particular? They are something I've been thinking about trying.
Really interesting regarding the vitamins! I'll add them to my list too. I currently take iron, Zinc, vitamin d and B supplements.
I agree hormone meds can really mess you up, I'd definitely like to try some more natural things if I can.
It really does, I think mentally I am suffering a lot more than I ever have but I think my body has been through a lot emotionally and physically recently. I'm sure it will settle down in time. Or I hope it will! So true about people not seeing or understanding.
I'm trying to be positive on the fertility front. I have always wanted to have kids so I think about it a lot as well. I've thought about freezing my eggs possibly but not sure how much it costs and if I need to etc!
That's so frustrating with your most recent surgery not finding any endo. I think that's the thing to come to terms with isn't it, it's a lifelong thing.
That's a great suggestion regarding the endo nurse contact number thanks 🙂 have you stayed with the same team since your diagnosis?
No that has been really helpful! Thanks again for taking the time to reply really appreciate it ❤️🩹 Thank you! Here's hoping we are both in less pain moving forward.
Hey 👋 I had laparoscopy in October was diagnosed stage 4. Bowel involvement and both fallopian tubes and ovaries.
I felt I recovered really quickly after the op and felt really lucky. However the last two weeks I have suffered with horrendous UTI. Docs put me on antibiotics which seemed to clear it up but within a week it came back and just started 2nd lot now and taken urine sample. Doc thinks its because they put a catheter in during surgery but that was weeks ago now and was taken out before I woke up.
Did they find out what was causing UTI with you?
Sorry this has turned more into a question than answer 😅 🤦♀️
Woo, October surgery buddies haha! Oh gosh that sounds tough, how are you coping with the diagnosis? Will you need more surgeries?
I recovered pretty quick from the actual op too! No, that sucks, I really do sympathise. That's so weird and sounds somewhat similar to me. I have been on 6 different antibiotics now with not much success. Which ones have you tried out of interest? Interesting! I wonder if they did for me during the surgery, I was never told they did so I'm not sure.
No 😪 it's really getting me down. I'm really worried about my kidneys because they think that's where the main infection is and is where I'm getting the pain mostly. Since the operation my bowels have been really bad. TMI but I am either constipated or have diaherra there doesn't seem to be any in-between at all. I've also had difficulty eating because of sickness.
My recent tests showed a few things but trying to get a doctor to speak to me is seemingly an impossible task which is extremely frustrating.
That's okay! It's good to share ❤️🩹 Hope you continue to recover well and get rid of the UTI soon. Let me know how you progress, if I can offer any advice I will! Did you get them a lot prior to surgery or not?
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