Has anyone else had their symptoms worsen dramatically within a matter of months?
Sex is now becoming unbearable, every time I do any kind of exercise (gym, running, paddle boarding) I am in pain for about a week after. Trying to be positive is getting harder when I feel like I’m limited to what I can do.
Once it’s been excised, can I return to these things? More of a moan than anything else. Thanks for your time reading! X
I’m sorry I haven’t had any surgeries yet to tell you if it improves or not but my symptoms have definitely gotten worse plus I’m experiencing a whole lot of new symptoms I never had a few months ago. Sex is a no go now as everything hurts and even non penetrative I feel like it’s all over sensitive down there. But not in a pleasurable way, it actually hurts and is uncomfortable x
Thanks for your reply, where are you with diagnosis etc? I’m hoping for a date this week for my first lap. Feel like things are getting worse with each month. Wow really? Not just penetrative? I’m sorry to hear that! What is next for you? X
I have an appointment on Wednesday with my consultant to discuss my mri results. All I know so far from an internal scan is that I most likely have adhesions on both ovaries and they’re stuck to my uterus. I’ve also had a chocolate cyst on my right ovary for at least 5 years. I got referred to a gynaecologist 5 years ago after horrendous periods since my mid teens (late 20s now). I was due to have a lap but by some miracle got pregnant. Endo symptoms went away while pregnant and breastfeeding so we tried and got pregnant again. I’m so, so lucky, thank God every single day. My youngest is 2 now and ever since my periods started again symptoms have been creeping back in to the point where I got re-referred to the gynaecologist just before Christmas. Fingers crossed you get your lap, are you nervous? How long have you known about your endo? X
Are they able to treat your adhesions? Congratulations on your babies ☺️ I was told I had ibs when I was 23 (30 now) but symptoms worsened as I’m getting older. Have you pushed for another lap? Are you in the uk? Endo hasn’t been officially confirmed although consultant felt my uterus is tethered to my ligament on my left side. I still can’t believe how many women are going through this, it’s insane! I’m not nervous about the lap, more what they are going to find.. but it is what it is ☺️ Always someone worse off xx
I believe they’ll burn the adhesions but I’ll find out for definite tomorrow. Thank you 😊. I was labelled as ‘lactose intolerant’ for 2 years as I had a lot of bowel issues before my pregnancies with endo. Now the symptoms seem to be more pelvic and back related. Aww I’m so sorry for you, hope the lap gives you some relief. We’re so alike, that is always my saying that there is someone always worse off. It really does help me get through sometimes.
Oh god you are finding out today? I too had a lot of bowel issues which seemed to ease with an anti inflammatory diet, for a few years.. still not entirely sure If it was bowel or not. I sound so similar to you, my back and hips burn with pain throughout my cycle. Good luck today, let me know how you get on xx
Wednesday, tomorrow sorry. Yes I get hip, leg and back pain on and off throughout the month. Heavy eyes, foggy head and muscle spasms too. Then for around 6 days during my period I have the excruciating stabbing, bowling ball in the pelvis type pains. That’s how it typically goes anyway. Since yesterday I’ve started feeling achey in all my joints and muscles. Not sure if it’s endo related but I’ve had stabs in the ovaries too so I’m thinking it might be x
I had this last May however I was unaware that I had Endometriosis. I was in hospital for 5 days and then again I was in hospital twice in October/November. Each time they told me they didn’t know what was wrong but I’d significantly deteriorated since May. It wasn’t until I saw a general surgeon within outpatients that suggest Endometriosis so she referred me to gynae. I had an appointment with a gynaecologist and he was unsure bare in mind I’m 17 and this was February and I hadn’t been in school since October because of how I’ll I’d become. I had an MRI which diagnosed Endometriosis in the pouch of Douglas. I was then told I couldn’t have a laparoscopy until August however very I’m fortunate and was able to go private. I chose an gynaecologist who had a specialism in Endometriosis whereas my nhs gynaecologist was a specialist in ivf so he didn’t know much from what I gathered. I had my appointment with my private consultant in early April and I had my laparoscopy a week ago today!
During my lap they discovered stage 3 Endometriosis in my pouch of Douglas, around my all of my womb, between my womb and bowel, all over my bladder and the top of my cervix. Astonishingly the only place the Endometriosis wasn’t was my ovaries and Fallopian tubes. Before October I was struggling with excise and doing so called day to day things like going to the shops. I’m 17 and only had sex twice and each time it was absolute agony, I’d sweat and shake from the pain it was horrific. During my laparoscopy I also had a camera put into my bladder as my private gynaecologist suggested that there was Endometriosis in the bladder however they didn’t find Endometriosis they discovered a condition called painful bladder syndrome which is a bit like ibs of the bladder so it can easily be helped by diet. When I spoke to my consultant after my operation she explained everything amazingly. She said that women in their teens and 20s have Endometriosis a lot more invasive and aggressive. It’s suggested it’s like this because the theory is, is that it’s an autoimmune disease and when you’re younger your cells reproduce quicker than they do as an adult there for the Endometriosis is worse because it grows quicker. The Endometriosis women in their 30s and 40s find is a different sort of Endometriosis so it depends on your age. To remove my Endometriosis they used ablation and excision. If I’d had it done on the nhs they would have only used ablation this sort of means they would have done half a job as they would have equivalently cut the weed but not pulled out the root so it would have been very likely to grow back. I also had the mirena coil fitted as multiple pills I was put on before didn’t work and coil is a way to try and help the Endometriosis growing as it stops you bleeding and the Endometriosis grows when you bleed.
I’m currently back in hospital after my op even though my op went amazingly well I’ve just been very sick and in a lot of pain but different sort of pain to Endometriosis pain which I had before my op. It’s under control and I’m getting great care at the private hospital I’m under as any issues regarding the procedure 4 weeks after it, it’s included in the after care to come back to here and not to an nhs hospital. This means they know me, they know my case and exactly what’s been going on.
They think it’s just my body’s way of healing as I’ve had a ct scan and many blood tests and they’ve all come back clear.
I have been told recovery for me is around 4-6 weeks but it varies for everyone depending what they find and what they do but definitely once the Endometriosis is removed you shouldn’t be in as much pain at all. Straight after my operation when I woke up the actual pain from the Endometriosis had gone the only sort of pain I was in was soreness and bruising which is normal after a laparoscopy.
I hope that this helped in any way and I wish you all the best in getting better. I hope you get better soon! Xx
I’m sorry to hear you’ve been suffering so much. That’s really interesting about the endo when you’re younger vs older. I’ll probably never know for definite but I’d say I’ve probably had it since my periods began looking back at my symptoms now. So is an excision a better way of getting rid so it is less likely to grow back? I’ve never tried any contraceptives to aid with endo symptoms. I was once on the pill years back for contraception but I hated the way it made me feel. I had my gallbladder removed almost 2 years ago and I recovered fairly quickly from that so here’s hoping 😬 x
If you’ve had the pain and issues ever since you started your periods then you’re more than likely to have had it when you were a teen. Excision is definitely the better way however I know if I’d had the laparoscopy on the NHS they wouldn’t have used the excision method, they would have only used ablation which means they’re technically only doing half a job as it’s more likely to grow back but it also depends how extensive your Endometriosis is. I also wouldn’t have found out about the painful bladder syndrome so I would still be having problems so I’m very thankful that I’ve had the full procedure. Everyone’s body is different and everything effects people differently so maybe you will recover sooner compared to others. Good luck I hope you get the help you need and some more answers x
Aww that’s comforting to hear that you don’t regret the surgery. I’ve read some not so positive stories. Thank you x
Definitely don’t regret it! It’s a step forward and I’m positive about the future just been quite low the past few days because I’ve been back in hospital and been so sick. Today I’m feeling much better though and should be heading home x
Thank you for taking your time to reply to me. You poor thing, so young to be putting up with this! I wish I could afford to go private, but do feel very lucky that I have seen an endometriosis specialist as my local hospital runs BSGE, which I am super grateful for. My youngest sister is now beginning to have investigations into similar symptoms, bless her. I have had the Mirena in since September last year, which has helped with the heaviness of my periods, but are still lasting about 11 days on average. I am sure this is what we all want, I just want to be able to do my job, exercise and live life like a normal human being. Really appreciate your response! What is next for you? I hope you finally have relief from the awful pain you have been xx
It’s okay, I want to help others out there with Endometriosis. We’re all in the same boat even though Endometriosis effects everyone differently no one should ever feel alone.
That’s great news that you’ve been able to see an endo specialist! I hope your sister gets the treatment and care she deserves.
It’s positive to know that the mirena coil has helped you. It was horrible when I bled more than I wasn’t bleeding, it was so heavy it would just drain me completely and I’d just feel physically and mentally exhausted constantly! So far so good and I haven’t bled since my op I’ve just been very sick but feeling much better today and I’ve managed to have something to eat but I’m still in iv fluids.
I just want to be a normal teenager and live my life like most others my age. It’s tough because I’ve lost friends from being so ill as I’ve been unable to so many things since May but it’s shown me who my real friends are. I think Endometriosis has changed my perspective on life completely, I don’t have time for drama or pathetic arguments etc. I just want to enjoy my life and live just like anyone else with Endometriosis!
I’m still in pain but keeping that under control with pain killers. Hope you get better soon and don’t ever feel like you’re moaning! Xx
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