Could have endo, due to have a lap and im scared

Hi, I am very new to this site, i have been doing a lot of reaserch and came across this community and god am i happy to find something like this!

I have been suffrering with odd periods for over 6 years, I have had the implant and it obviously stopped my periods so i was never suffering with many symptoms, but i am now wanting to have children soon and now using the pill as oppposed to the implant.

even when i had the implant i suffered with terrible periods every now and then, I am now suffering with pain,cramps,pain down my side and leg and periods lasting over two weeks.

I have seen my gyna and he send he thinks it could be endo, i have had ultrasounds and bloodtests because my doctor at first thought it was my kidney's due to the pain raidiating to my back all the time.

so sorry for the ramble, i am now waiting for my laparosocopy procedure, and was wondering if anyone could tell me how it went etc, I am scared to death and hate feeling out of control so i would love some advice! Also i know everyones symptoms can be different, does anyone else suffer with a full feeling in the pelvis, back aches and nausea along with cramps etc?

Thank you so much for the help in advance!

23 Replies

  • Hi Katy,

    I've got exactly the same symptoms as you plus fatigue, it's not fun.

    Sorry I can't help with the surgery question because I'm also waiting for it but I can say I know how ill it can make you feel and that you're not alone xx

  • It's reassuring knowing others have the same symptoms! Yes I supposed I need to think of it as being better than what I'm coping with now. Thankyou for your reply, please do let me know how you get on with your lap once you have the date! Xx

  • I will do! When's yours? It's such a scary thought but surgery is the key to a diagnosis and like the other ladies said its hopefully the step towards real pain relief xx

  • Exactly! That's what I have to keep telling myself! My gyna said it will either be on the 16th Dec or 20th Jan (as he was scrolling through his diary) so I am just waiting for the official letter! When is yours? Xx

  • Have you had your confirmation yet? Mine came yesterday and mine is also on 16th December. I have very similar symptoms with nausea and cramping, awful backache along with bowel problems and horribly painful sex. It's always good to know you're not alone in this 😊

  • Hello, please don't be scared. The thought of it really is much worse than the actual procedure. I had a laparoscopy a month ago and was really nervous. I wrote a post describing exactly what happened, if you click on my name you can read it.

    I didn't get endo treated this time and am waiting for future treatment but now I have been once I won't be anywhere near as worried next time.

    Yes I have had all of your symptoms over the years and others too. My actual periods are worse than my labours were when I had children, horrid back ache, flooding, bleeding inbetween, pain inbetween. Now you have found this community you will find lots of others with the same issues and lots of understanding and advice. I think I read every post on laparoscopies before I had mine and it really helped me to stop worrying.


  • All I can say is thankyou! I just read your post and honestly that chills me out knowing that the actual getting put under isn't as bad! I am aware I will be in pain after I'm sure but I think it's the fear of the unknown more than anything. I'm sorry to hear you are riddled with the disease but I'm sure you were relived knowing the pain was due to that! I'm hoping in a way they find endo because it will finally be an explanation for the pain, if not it will be back to square one. But I will conquor that as it comes! I will be sure to let you know how my lap goes and will defitnley do a post after to help others! Thankyou once again xxx

  • I totally understand, I think fear of the unknown is the worst part. The general anaesthetic was my worst fear. Now it's been just over a month and I feel back to my usual self, still a bit bloated but no more than usual. I agree with Flynn_Maverick about trying to be as healthy as possible, I try to be healthy anyway, as well as endo I have thyroid problems so try and maintain a good diet. Before laparoscopy I cooked and froze some healthy meals for afterwards. I had tons of spinach, lentils all different vegetables, luckily I like all that stuff!

    I have had my follow up and am still deciding what I would like to do next and I have asked to speak to another specialist to get another opinion so I can make the most informed decision possible.

    I have to say my experience with the NHS so far has been quite quick and everyone has been lovely.

    Take care, I will look out for how you get on. If there is anything else you want to know ask. I have asked people so many questions, I just like to know everything I possibly can.


  • That's really lovely thankyou!

    I have gained a bit of weight since my periods started being over two weeks I just wanted to eat rubbish food so have been trying to get back to a healthy diet!

    Let me know how you get on with the second opinion, I hope you find a solution soon! Xx

  • Thank you. I do feel lots better just knowing what's going on and being more informed about everything. I am sure you will be relieved when the whole thing is over with. If you do have it just before Christmas make sure you rest and let everyone wait on you and do all of the chores.


  • Hi there, First of all I'm really sorry to hear what you are going through. Endometriosis can have so many different variations on pain (different types of pain and severity) plus different symptoms that I doubt two women could match their symptoms! Which really can fill you with doubt before you are surgically diagnosed. But yes, it does sound very much like you have endo. I get awful pain but by far the worst symptom is the nausea. I would recommend bucchastem or Bucchal for this, which you can buy over the counter. Again, I get severe back pain (the only reason for being on this site at 3pm in the afternoon is that I am off work with shooting pains going up my back) - I use an osteopath to help with this pain and it really helps. It costs about £40 a session and I would recommend this if you are finding the pain debilitating.

    However, laparoscopy is by far the best treatment out there, in my opinion. Surgery is terrifying of course, but I promise it is worth it. So, my experience of it is that you are scared and uncomfortable on the morning of the op because you are not allowed to drink or eat and obviously you are nervous. But your parents, partner of friend can stay with you, right up until you go through to theatre.

    You get asked to put a hospital gown on, have to give a urine sample and there's a bit of paperwork to do. Your surgeon will come and talk to you beforehand and explain stuff, giving you opportunity to ask any questions or voice any concerns.

    Then you will walk through to theatre with a nurse, there will probably be an anaesthetist and an assistant who will just be very jolly hopefully and make it feel like you are about to have a haircut or something equally mundane. They inject the anaesthetic and ask you to count - you won't get past three. For me, it just felt icy cold and I got a weird taste in my mouth and then I was totally gone, no time to worry or even think.

    Then you wake up in recovery and they ask you if you are in pain or feel sick, both of which they immediately give you something for. You will be on a drip and will just be very sleepy and disorientated and won't really care what is going on! I needed to use the bedpan a couple of times because of the drip and there was quite a lot of blood, but I was assured that is normal. In the morning I was able to eat a little bit of breakfast and go home.

    I then had a week of feeling incredibly tired and surgery does hurt, BUT, unlike endo pain, surgery pain actually goes away when you take painkillers! So it is totally manageable. I had a tiny bleed from the incision after about four days but it was fine. Your tummy will be big from the CO2 for a while, mine took over 2 months to go flat again. You will get spectacular bruising that will take a good 6 weeks to disappear fully.

    I took two and a half weeks to fully recover because I was so ill when I had the op - anaemia, chronic fatigue, the works - my friend however had the same op and was back at work within a week. So the healthier you can get before the op the better it will be and the quicker you will recover.

    The good news - once you have recovered from the surgery, at least for me, I felt AMAZING! I didn't even need to take paracetamol for periods, every single symptom left and I got my life back on track.

    Mine did come back, but that's because I had endo on my diaphragm, which isn't that common, so the surgeon didn't pick it up at the time. So it never got removed and then stated causing problems again 18 months on. I'm having another lap without a second thought because it worked so amazingly well the last time.

    I hope this helps and really wish you all the best for the op. Take care x

  • Thankyou for telling me about the whole process of the lap etc! It's nice to know what I will be expecting. Sorry to also hear you suffer from back pain! I seem to find that worst that the actual cramps. I will 100% look into seeing an osteopath anything to help ease the pain until my op. I have done some search on diet, so I'm trying to eat as healthily as possible!

    I will see my anaesthesia doc before the op so I'm hoping he can help with my worries!

    I will be sure to let you know how I get on, I'm waiting for the lap date, he said it will either be the 16th Dec or 20th Jan! So I supposed sooner rather than later would be better!! Thankyou once again! Xx

  • Good luck! Yes do let us know how you get on :) even if it's on the 20th you will definitely be better, if not a little tired still, for Christmas Day!! Xx

  • I had laparoscopic surgery last April. It wasn't totally successful in "fixing" my endometriosis b/c mine is widespread and some of my organs are stuck together (with scar tissue from the endometriosis) and they weren't able to separate them without risking damaging the organs. However, the surgery itself wasn't a big deal and I was feeling back to normal in about a week. I hope you can not worry too much about the surgery and know that most people come through it fine with no complications. I hope it helps with your pain!

  • Thankyou!! It makes me feel a lot better! I'm sorry to hear about your endo? Is it stage 4? Xx

  • Yes, is yours?

  • They are not sure until my laparoscopy. Very nervous! What has the gyna suggested for you? Is there a next step after your failed lap? Did you recover ok after it? X

  • That makes sense, they'll know better what's going on after the surgery since they can only see so much on an ultrasound in advance.

    What's going on with me may be somewhat specific to my situation:

    I have an endometrioma in my right ovary which the doctor drained during the surgery. The plan was for her to remove the whole ovary, but she wasn't able to because my ovary's attached to my ureter and she didn't want to risk damaging it (and causing kidney failure). So, now the endometrioma is growing back. The next step may be for me to have regular surgery (not laparoscopic) with a surgeon who has specific experience with this to remove the ovary.

    I also have endo throughout my abdomen and on my diaphragm. Since I don't have any pain when I breathe, my OB/GYN thinks it's safer to just leave it there rather than try to remove it through surgery.

    I'm taking progestins (pill form) continuously to stop my periods, in order to reduce bleeding and scarring in my abdomen. This has decreased my pain, although annoyingly it makes me hungry all the time. However, I see that you want to have children, and taking this would prevent pregnancy (same hormone as in the implant).

    For me this is a moot point since my doctor has told me that I'm not able to get pregnant on my own anyway, b/c of the severe scarring in my fallopian tubes and ovaries. I might or might not be able to have children through IVF, which I can't afford (I don't know how this works everywhere, I live in the US and my health insurance doesn't cover it). So I've decided I'm not going to try to have children from my body, and going through some grief about that. Since I date women, I could potentially become a parent if I have a partner who would carry the child.

    I'm not trying to imply that you won't be able to get pregnant, everyone's situation is different!

    I also find that ibuprofen, using a heating pad, and hot baths help a lot with pain. I'm guessing maybe you've already tried these things?

    Thanks for listening to this long post and I hope your surgery goes well!

  • Thankyou for your message! I'm sorry to hear that your having such a bad time with trying to get the right treatment. I definitely think it more research needs to go into the disease.

    I'm not sure about how Ivf works over here but if I am in that position I think I will have to discuss that with my gyna.

    I will let you know how the surgery goes x

  • Hi Katy,

    Trust me I am the same! I am waiting for my lap! But you got to think you are alive and not going to die from this! My other half whenever I have a melt down says to me that I am okay.

    I am in the exact same position awaiting results that could change your life but please do not panic. Just deal with it when it comes or you will get in such a state like I was!

    I was thinking about suicide just thinking about the worst but you can't!

    We are all strong brave women who are all here for you, that is why I turned to his website!

    We are all in the same boat, dealing with a situation that doctors do not know a lot about so we much stick together


  • Thankyou! It does make me feel better knowing we are in the same boat?

    when are you due to have your lap? Are you worried about it or have you ways of keeping calm? Like I said to someone else I think it's the fear of the Unknown and also the outcome of the surgery!!


  • When I first found out I was due to have one, I was panicking so much! I was crying all the time and like you say scared of the Unknown!

    But just try not to think about it in a negative way. It's a step in the right direction

    I have been told my appointment will be by Feb but have no received a confirmed date yet 😔


  • I'm so nervous! But so many women have this operation! I just need to think it's for the best!!

    I'm due to have mine mid December so I will be sure to let you know how it goes! Thankyou for the message xx

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