Hey! So I am very new here & looking for some advice/ comfort. I'm not really sure what.
Little background, I started my periods at the age of 12 , I am now approaching 30. I have suffered from my first period with all the usual endo symptoms but back then put it to age and hormones being all over the place. I was placed on the pill at 14 but had awful mood swings & depression which ultimately resulted in me attempting suicide just before I was 16. After then I suffered with depression for several years.
At around 17/18 I was getting horrendous stomach pains where I was told it was IBS/ rumbling appendix and even wind. I'd visited a&e on several occasions for this. I eventually saw a gynae who then referred me for a laparascopy but I was with an abusive partner at the time who made sure I couldn't get to my appointment.
Fast forward to now, I'm depression free and have been for a number of years and finally feel quite content. I've always suspected that I could have endometriosis and felt guilty for myself that I never stood my ground and went for the laparascopy.
I visited my GP last month for abdo pains, again told its IBS and to take tablets. Surprise.. they didn't work, saw the GP monday and now going down the gynae route. Today I went for an abdo/transvaginal ultrasound & no abnormalities. After a chat with the gynae team they are certain it's endometriosis.
I'm feeling all sorts of mixed emotions, relief, anxiety, loneliness amongst more. Its not a definite diagnosis although they're pretty certain.
The gynae team want to explore the mirena coil route before any surgery to confirm which seems odd to me. I've expressed my concerns over how it could affect my moods again & generally the thought of it just doesn't sit right with me. They've already said there is a high chance of me needing surgery further down the line due to the length of suffering & how far it could have spread so it doesn't make sense to me that they don't cut out the middle step.
I'm just wondering how others were diagnosed & how you felt hearing you could/ do have endometriosis.
Apologies for the long post, finding it a tough one to get my head round.
Thank you for reading (if you made it this far) 🙂
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Hi, thank you for sharing your story. Sounds like you've had tough time, but things are brighter now. I was diagnosed in March 22. I actually suspected it was this as I've had problems for years (2004). It was a relief to finally put a name to my symptoms, because I felt that it was in my head and the Drs were sick of me. I too, was told its IBS.
Its so sad and frustrating to hear that you felt it was in your head and that you weren't listened to. A relief you got a proper diagnosis though. I hope you're able to manage your symptoms and lead a relatively normal life 🥰
Thanks for sharing and sorry it’s been such a long journey for you, unfortunately it’s all too common an experience for sufferers.
I also hated being on hormones and can completely understand where you are coming from,m. To be honest it doesn’t sound like a middle step as such. Rather the sad truth it that there are phenomenally long wait times for surgery (many are waiting over two years, but depends on which trust you’re with). They’ve likely offered the coil to help with managing symptoms while you wait, it’s not a case of getting the coil will delay surgery further, but rather I suspect they hope it will make the wait for surgery more bearable.
Mirena coils do deliver hormones but it’s far more localised than oral contraceptives and many women get on better with them - so it really depends how you’re doing with the symptoms and if you want to try it. The good thing about a coil is it can be relatively easily removed if you’re not getting on with it. That said some people do struggle with them so it’s worth reading up on it and only you can make the decision if it’s right for you or not.
I think I'm more frustrated because all those years ago I was offered the laparoscopy in the first instance and now feel I have to jump through hoops. I understand they want to explore all avenues before the surgery option but the thought of it just doesn't agree with me and I would rather wait and suffer for a confirmed diagnosis rather than trying to mask symptoms. I know how absurd that sounds and I do wander about my brain sometimes haha! I've got a few days to think about it now before the GP gets back in touch so I think I'll get my research in.
Hello,I am similar to you as in hormonal pills causing all kinds of problems.
From my experience the merina has been very helpful. I was diagnosed with adenomyosis from an ultrasound but my symptoms (Rectal pain etc) is suggestive of endometriosis also.
I have seen many doctors and a gynecologist and was recommended to try the merina first as its less invasive and a good solution if it helps for a few years.
Surgery can cause scaring which then creates new pain.
For me the Merina has minimised my pain alot! Plus I don't have the tender breasts, bleeding, headaches etc that I did on the pill.
Ah it's nice to hear some positivity around the Mirena as so far I've read a lot of women struggling to get on with them. So sorry you've had to deal with all this but I'm glad the Mirena has worked for you. Out of interest have they considered surgery for you or just happy to keep you on the Mirena as long as its effective for you?
No no talk of surgery yet. They were quite against it and said even though its the only way to truly diagnose they'd rather I check in in another 6 months to see what the pain has been like. I still get pain but it's very manageable and havnt had to take anywhere as much pain relief.I was very upset about having the merina too and I was told by some people that it was awful ect. But then others that had it just for birth control said it was great.
The Merina is only a temporary fix if it continues to do well, so in a few years im expecting thatd it could be at that next stage. I think because it has stopped my periods that's why everything has calmed down.
My periods never stopped on the mini pill. In fact cerazette cause prolonged bleeding.
Hiya, I wanted to respond to your post as I felt really strongly about what you have shared 🙂it’s really positive that you are now on the pathway to getting a diagnosis and support but I just wanted to say that ‘ you know your body best ‘. I have endo and have had excision surgery, by the time I had diagnosis it was so extensive. At this point I too was still being offered a coil and after suffering very similarly with the mood changes you have explained from previous birth control. I chose to decline the coil and I’m so glad I did. This is my personal view but I get that any hormonal Avenue just masks the symptoms of endo and that’s if it’s effective. I was nearly driven to the brink with all the different hormonal options. But to me the only way to get to the root of the endo was to have it removed. Have you heard of a group called ‘ NANCYS NOOK’ that’s on Facebook? That has really helped me with my understanding of treatment.
This is the thing, I think I reached an age where I felt I didn't want to speak to a professional about the symptoms as I felt 'too old' to talk about 'period pains' but I couldn't have been more wrong. I'm so sorry to hear that you've had to suffer too. The mood swings can be horrendous can't they! I feel people who haven't experienced these changes don't understand the effects in can have on mental health and leave you quite isolated, or at least it did for me.
I hadn't heard of Nancys Nook but I'll be sure to check it out - thank you
So, first up, I'm sorry to hear you've experienced this. I'm sure it's not any particular consolation but my tale is similar - periods started at 12, extremely bad pain, heavy bleeding, related gut upset/pain and to top it off, hormonal migraines as well. In my case, I tried a whole array of different pills and painkillers over my teens up until early 20s, when I settled on just a combination of painkillers and a combined pill that I sort of got along with (...that didn't, for example, just make me bleed continuously all month. Or pass loads of clots. Or turn me into a hormonal monster. Etc, etc.).
That pill did help make my periods regular, and did improve the pain and bleeding but frustratingly not enough that it didn't continue to impact my life. About 10 years down the line I came off that pill for a variety of reasons, and the pain has returned to previous levels and then some over the couple of years since so I am currently pursuing further treatment again. Like you, I am extremely wary of returning to hormonal treatments having experienced the variety of side effects and seen how much my mental health has improved since coming off the pill (pain aside!).
I have been diagnosed with "suspected endometriosis" in the past as well as "IBS" (also ended up in A&E because of that); I have had numerous (clear) ultrasounds over the years (as well as clear colonoscopy etc).
One of the things I tried along the way (when I was about 20) was the coil. Given my past experience with reacting so differently (and badly) to different hormones, I was (and am) clear I would never try a hormonal treatment that I can't reverse immediately (ruling out the implant and the injection). But I had been sold on the idea that the coil was easy in, easy out, and has the advantage that the hormones would be local - all sounded great.
Sadly, in my case, my cervix/uterus had other ideas: it was extraordinarily painful (even worse than my period, ha) to have it fitted; I was given no pain relief beforehand. A couple of mins after it was fitted I went into a form of shock in reaction - faint, low blood pressure, delirium, the works. They gave it about 40 mins to see if it would pass and when I got no better, they opted to just take it straight back out again. Lovely.
I learned later that it's pretty common for the experience for coil fitting to be painful, and for some women excruciatingly so; fainting during the procedure is surprisingly common. I was also told it used to be the case that the coil was only offered to women who had had a baby (who's cervix had therefore been "opened").
Apologies if this sounds like a bit of a horror story; it was pretty deeply unpleasant. I suppose my advice on the coil would be: if you're on the fence about it, it's probably not the right choice and it's totally OK to make that decision. That said, if you do opt to go for it (because, like others have said, for some it really does help and at the end of the day that's the most important thing) make sure to ask for pain relief or local anaesthesia, especially if you've not had children. Some women do find it a total non-event so I think I was probably moderately unlucky but I also was very much not made aware of the range of possible reactions by my GP and would have appreciated knowing that going in.
Best of luck with it - both with whichever approach you choose and with managing your symptoms going forwards.
Oh gosh. I am so very sorry for all you've been through. I can only imagine how difficult it was to deal with all that. I'm a firm believer of going with your gut instinct and I feel in this instance the coil isn't for me so think I'm going to push to avoid it.
I can not believe they are still pushing to have the coil despite so many women not getting on with it and experiencing what you went through. I do get pain during sex so the thought of something being up there permanently terrifies me. Also the fact that you can't just remove it yourself. I dont want to have to wait weeks to have it removed if its causing me issues.
Have they suggested a laparascopy for you to confirm endometriosis? I'm intrigued which other treatments they will offer you.
I've been exploring the private specialist route as a possibility when I win the lottery ha ha!
I have had Mirena fitted twice. The pain from it was horrible (one night I was ready to call A&E but was thinking I won’t be able to open the door for them cos couldn’t move. Since then I keep my painkillers under the pillow 😁) and it gave me prolong bleeding .
When I asked GP to remove it ,she said NO, you must wait 6 months for Mirena starts working.
But likely my body just pushed it out 😊 I was in such pain from my bowel liaisons and agreed to fit it again 🤦🏻♀️ But it wasn’t any better and my body pushed it out again.
Finally waiting for hysterectomy now. Consultant prescribed me Prostap 3 injections, which helped me A LOT.
Oh gosh! Why do they feel its acceptable to decide what we can and can't do with our bodies, we are the ones living the pain not them. Our decision should be respected. Im sorry you had to go through that and to hear you're having a hysterectomy. I hope that's not been too tough to deal with.
It looks like the operation is only the solution. I am constantly fatigue and in chronic pain which started to affect my mental health. I have one good week in a month if I am lucky. I told my consultant -it is not a life 🤷
Remember you can say no to the coil, they use it lots these days, but if you’re worried about how you feel or might feel, tell them. No one can make you do anything you don’t want to.
I left things much longer than you have so glad you’re looking into things. I probably wouldn’t consider the injection, Zoladex or another name that’s similar product. Sent my emotions loopy.
If you decide on just surgery that’s ok.
Hope you get some full answers soon, sounds like you have an ok Gynae 🙂
I've done alot of research the last few days & I think I'm going to go with my gut instinct. I'm wary of trying something that im not comfortable with and when I haven't had full confirmation that it's endo. It's scary the effect some of these treatments can have on your mental health isn't it.
I think you're right, compared to others I've been rather lucky.
Only you know how you feel. If they try to persuade you otherwise just bring in ‘bullying’ subtly and they’ll back off straight away.
The effects vary so much but can be very detrimental for some. I know women who’ve had a really hard time getting hormone supplements right. Drs hate them because they just don’t know enough.
Good luck 🤞 for you. Hope you’re managing to enjoy the bank holiday
Hi, thank you for sharing. Firstly I'd like to mirror what some of the other comment are saying that you know your body best.
It's an unfortunate truth that sometimes our well meaning GP's can make us feel like we're just being bothersome when trying to advocate for ourselves. I had been misdiagnosed with IBS for 15+ years before I finally got one to listen to me a refer for a laparoscopy. During those years my symptoms progressively got worse but doctors were still treating me for IBS and saying things like "most people learn to deal with it", "you just need to change your diet", "it's just stress". I often came out of those appointments upset and feeling like a nuisance for wasting their time and needed some encouragement to keep going back and pushing for answers, and I'm so glad I did as in my case the laparoscopy was able to confirm what all the tests and scans could not. I had my laparoscopy in Jan this year, they found extensive adhesions on my bowel which they were able to remove there and then and my quality of life has improved immediately. I was already on the Mirena coil prior to the laparoscopy, and will continue to use it to help prevent further adhesions forming but the coil itself couldn't have undone the adhesions that had already formed and prevented the pain I was in because of them.
With regards to the coil itself, I have tried a few methods over the years in the hopes of managing my painful periods (pills, injections, patches, ring & coil) with varying impacts on my general wellbeing. The coil seems to be the one that works best with me, however appreciate every person is different. If you do decide to try it, I'd recommend checking they have someone qualified to administer the anesthetic injection available for your appointment, it's not always offered but available if you ask.
Hopeful you are now at the end of what has been a long and hard journey to get a diagnosis. Wishing you all the best for the future. xXx
They had also told me I've got IBS and some of the symptoms are relevant to how I suffer but I've always felt that isn't the root of it. I saw the GP recently for abdo pains & he prescribed omeprazole & to keep a food diary, neither of which helped so I expressed my concerns that it could be a 'female' problem and thankfully they've been understanding and listening to how I feel. I've had this for 18 years now so like yourself, if there are already adhesions there then I'd only be masking the problem when the gynae has already suggested surgery further down the line. It's not 100% confirmed that I have endo so until then I'm reluctant to try the Mirena & risk the state of my mental health.
I'm glad you have had a positive experience with the coil. Something I've not read too much of.
Thank you for sharing your journey. Wishing you the best 🥰
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