Hi everyone. I had my first laparoscopic surgery yesterday. I have had extremely painful periods for 10 years, frequent urination for 4 and bowel and gastronomy issues for 2.
I was told yesterday that I only have stage one endometriosis and this wouldn’t explain my situation. The surgeon wasn’t very helpful at all. He told me that because I refused the coil, I wouldn’t get better.
Any advice on what I can do now? I need to book a follow up with GP but I’m not sure what to say.
Thank you all and hope your doing okay x
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Pumpkin_queen01
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I'm so sorry that youve had such unsympathetic treatment. Ive read repeatedly that the stage of endo does not equal the pain. Did they remove what they found. Ive got my first lap on Tues but they pretty sure they saw endo on mri and are planning to take it out. All the best with getting things sorted. I refused to be put into early menopause hence an emergency lap so fight for what you want and need and if you don't want a coil they should be doing more. Big hugs.xx
Thank you Rhhh . It really knocked me back ngl. They found endo and removed it. But said that it’s unlikely it’s causing the issues. I might ask for a second opinion as it definitely is gyno related. Good luck for Tuesday ☺️ I hope it goes all okay for you xx
So the amount you have doesn't necessarily correlate to your pain /symptoms. You can have stage 1 and have loads of pain and symptoms or your can be stage 4 and have little to no symptoms.
Do you know of your gynaecologist has a specialist interest in endometriosis or if they are a general gynae? As endo can appear in a variety of ways and if they aren't that familiar with endo they may miss endo due to it not being the most common looking etc. Give yourself a few months to see if it has helped. If it hadn't then go back and ask for a second opinion.
Might be worth requesting a copy of your hospital notes, it may prove useful for a follow up or second opinion. There should be photos as well. There’ll be a form on the hospital website.Echoing others re the pain and endo, everyone is different. Do you know if the nerves were effected?
Hi dear hope u are okay I had two laparoscopic in 6 years but laparoscopic helpful for few years after that again same I was scared from Merina coil Cz on google so many bad reviews but I try it and tiday it’s been 2 years I feelLike I never had endometriosis living normal life I always scared near my period date but now I am like other women’s no pain no stress I suggest people Merina coil is the best option 100% effective in endometriosis condition forts three months are little disturbing but after that life is easy I used to take off from work every time I have periods and had fear I’ll loose my Job but thanks I went with that option my condition vdout Merina was very bad I was literally fainted due to pain sometime things need to b try .
Thank you for sharing. I’m glad you’ve found something that has helped. I said no because I don’t react well to hormones of implants in my body. I’m gonna keep looking for answers when I feel better
Hi,Have you made any changes to your diet or added supplements at all? My life has begun to change already and I have stage 4 and not had a lap yet... it is amazing and frustrating at the same time how effective changes to what you eat can make a big difference to pain and issues when the docs just wont always tell you about it.. please do find yourself a nutritionist and have faith you can at least take some control.
Next I would find an endo specialist not just a surgeon.. can recommend Mr Chris Mann if that helps (uk).. google him.
I had my first laposcopy too and sounds like I have similar symptons to you. I couldn't fault my surgeon.
They found something in my pelvis- either endo or inflammation from an infection so they have removed it and gave me antibiotics. They have taken a biopsy and will write to me to confirm what it is.
Before surgery he did recommend the coil and to be honest the thought of it makes me cringe. He said it can keep endromitriosis at bay as well as helping with pelvic pain not relating to endromitriosis so whether you have it or not it was recommended. It also helps with period pain and reduced periods and can stop them for many so in the end I went for it. It does creep me put knowing there's something up there! To be honest it's worth thinking about and considering as your GP surgery can fit it for you. My mum has one too so I'm sure I'll ask her questions about it when I see her next.
In terms of the bowel issues, I was diagnosed with IBS in January and have not been able to control it. Gyne said that both inflammation and endo can cause IBS symptons even though my bowel was fine. Whether it was the cause of I'm unlucky that I have both, they can't confirm - only time will tell. Its unfortunately but endo and IBS is extremely common and both feel like a complete taboo subject.
I have decided its not worth being quiet about and have been open and honest with my friends, family and close colleagues - regardless of it being a sensitive issue as to be honest, I feel better knowing someone has my back with this wherever I go and stops people question why once a month I'm a little worse for wear than I should be and the frequent trips to the toilet are explained without me saying a word.
Thank you for sharing your story. I didn’t get the coil because I have not had very good reactions to birth control in the past. I want to know what’s actually happening to my body. Il keep asking questions and hopefully il get somewhere.
Hi If you are in UK are u treating under BSGE centre or its gernal gyano? What surgery they did ablation or excession?dont panic and see how you feel after if you wouldnt feel better at all ask your gp to send you to the endometriosis centre(BSGE).When I had my first laproscopy I was treated under gernal hospital and doctr wouldnt train at all when I woke up she said it was stage 1 endo and we removed that but I had stage 4 since that time ,after 6 month I went back to the hospital with horrible pain again so there was a different doctr and he revealed you were operated with stage 4 already.
So ask them to hand over your reports and all finding and go for second opinion if you can.
Those stupid surgeons- mine said the same about the coil- makes me mad when I can’t help but think that contraception and messing around with hormones is part of the problem and why so many women get endo in the first place. I’m really glad I refused the coil, last time I had it it was really painful for the whole time until I had it removed. My gp offered various forms of contraception to stop the menstruating as that seems to be their only way they know how to stop the symptoms,I just said thanks but no thanks. Everyone’s different but luckily I seem to be managing my Endo with high strength fish oil and evening primrose oil, an anti inflammatory diet and essential oils and castor oil. Sounds crazy but I think if you explore all the natural approaches you eventually find a combination that can work for you. There are lots of good books/blogs out there. I just started by searching for second hand books on healing Endo naturally on eBay. I found seaweed supplements help with the painful periods too. I agree with others the stage of Endo is irrelevant in terms of symptoms - but any inflammation in that area can do the same so in my opinion finding out about antinflammatory diet etc is key whatever the cause of the issues are. Doctors don’t tend to agree but they don’t know a lot about it- I got advice from a nutritionist which had been really really useful.
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