hi I was diagnosed with endometriosis with cysts on both ovaries that have pulled them back adhering to my bowel last month after years of downplaying my symptoms as a stressful life or the doctors saying I had IBS , unexplained abdominal pain or nerve damage after gall bladder removal. They fitted the Mirena coil at my diagnostic appointment (which was excruciating as they told me I have a tilted uterus and hadn’t had my twins via natural birth - I did try to!) I bled for over a month with constant pain and ended up in hospital last week with a severe infection. My twins found me collapsed on the kitchen floor screaming in pain. I am considering asking for surgery and taking this coil out as it feels worse than before they put it in and it certainly isn’t helping any. Im not sure I can live like this as im my husbands full time carer, have my kids to care for and a job that I am now letting down by being off sick.
has anyone else been in a similar situation and chose to either stick with the coil or get surgery? If so what were the outcomes?
thank you for any guidance anyone can give me.
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Jem33
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it sounds like the coil may have moved so I’d get it taken out. You can do that without surgery but it sounds like it may be painful so surgical removal would be best.
With things as they are it sounds like you have severe endo. And quite likely deep infiltrating endo - if the cysts are endometriomas - which are endo cysts or blood filled cysts, they point to deep endo. And a coil won’t help that. It may stop bleeding and help the symptoms but it sounds like it isn’t for you. I had horrendous issues on coil. Managed 4 months before I had it out. Constant bleeding and migraines every few days. I went onto have a hysterectomy as I had adenomyosis as well as endometriosis.
As I say it sounds like you have severe endo so you need to be seen by an endo specialist. They are at bsge centres and your gp can refer you if you meet criteria. I’d need to know a bit more of your endo history to say for sure but it sounds like you do qualify. Then they can properly assess you and see if monitoring you will be ok for now or if surgery a better option. And if surgery they’d likely look to do excision of endo first before anything more complex to see if that helps.
I would say my symptoms of painful heavy periods started after my twins were born 11 years ago. Prior to their birth they mentioned Poly Cystic Ovary Syndrome but where I am now points to that being the start of the cells building. I was having a lot of abdominal pain since then but they said it must have been nerve damage from when they removed my gall bladder the same year the twins were born. Painful bowel movements started not long after that and they told me it was IBS.
The severe symptoms of excruciating pain mid cycle and then duller pain the rest of the month only started earlier this year but it’s unbearable. Always exhausted and unable to get comfortable due to pain in my hip (the side where the cyst is bigger). At my MRI they found both ovaries had cysts and had pulled back and adhered to my bowel.
Since the coil was put in the pain is constant but they said it is still in the correct place. I get bad heartburn and indigestion since then as well which I have never suffered from.
I’m under the care of a gynaecologist, is that different to an endo specialist?
How did the hysterectomy go for you? Did you recover well and do you know does that stop it coming back?
Thanks again for replying to me I feel lost, confused, scared and alone. I don’t know what to ask or even who to ask!
it does all sound like endo and maybe adenomyosis too. That’s when endo has affected actual muscle of uterus and can cause heavy bleeding. Endo is more likely to cause the pain, and bowel symptoms - ibs is often a diagnosis given when endo has been missed.
An endo specialist is a Gynae but they need extra training and you don’t want to be with just general Gynae.
My hysterectomy made things worse for me as it was incorrectly done by a general Gynae. I then found out about endo specialists and bsge centres and have had 3 more surgeries since to get out of pain. Basically endo was left and it keeps growing if it hasn’t been excised properly it took me the 3 ops and 5 more years before I recovered properly and felt better
If you’re on Facebook do join a group called endo revisited. I’ll link below. As that gives U.K. pathway and treatment info that will really help guide you further.
thank you I have Facebook (only for the twins VR headsets) so nothing on my profile whatsoever as I’m not a fan of social media. However I didn’t request to join the group, not sure I’ll be accepted with nothing on my profile though.
You have given me excellent direction for my next appointment though so I’m truly grateful, thank you so much.
Hi, your story sounds the exact same as mine! I always suffered with painful heavy periods as a teen. Got put on the pill at a young age. Then had my twins via c section. Then the bowel issues started and got told it was probably ibs. 2 babies later and my periods were worse every month.
Last year i had unbearable pain for 2 weeks every month with spotting inbetween. I finally got to see a consultant at the hospital who said it was probably endo and i was put on a waiting list for a laparoscopy. The pain kept getting worse so they did some scans and saw i had a large endometrioma. That brought forward the surgery very quickly. I had a laparoscopy last November.
They removed the 9cm cyst and half of my left ovary. They couldnt do the rest because it was stuck to my bowels and no bowel surgeon present. They also removed alot of endo from all over my pelvis anr diagnosed me with stage 4. I was pain free for about 7 months and then it all started again.
Fast forward to now, i have large cysts back on both ovaries, 7cm and 6cm. They inserted a coil in September, also have a tilted uterus and the pain inserting it was the most painful thing ive ever experienced! Ive bled every single day since.
Went back to the drs and the put me on a progesterone only pill as well the coil. 2 months in and im still bleeding. Still have the pain waking me in the night from the cysts, painful and urgent bowel movements and i cannot hold my urine for long either.
I am seeing my consultant again at the end of January to discuss what happens next. Living like this until then makes me feel very low.
If you would like to speak more because we are pretty much identical feel free to message me directly on here and hopefully we can help eachother x
oh no that sounds awful for you! I’m so sorry your going through this as well.
They have said I will get another MRI in 5 months time to check if the coil is working (they thought by inserting it it would stop the progression) but there has never been any offer to also remove the damage already done which is why I think I’m still having the pain. They haven’t said I’m a particular stage either so it seems like I’m at the very start of my endo medical journey even though I have been going to drs with pain for years. They have said I can have the coil taken out but I’m worried if I do that before any surgery options then I’m risking it developing more and getting worse.
Was your first surgery easy to recover from? I’m nervous about getting surgery as I’m the main person in my home who does everything so it’s hard to be out of action physically but I don’t think I can live like this.
Its awful isnt it. Same they said to me to really try to keep the coil for 6 months so im going with it and each day i hope that i dont get any bleeding but it hasnt happened yet.
Maybe speak to the dr about a progesterone only pill as well like i have?
I'll be honest it wasnt the easiest recovery. I was a late surgery and couldnt pass urine in the time they wanted so i had to stay overnight. I did manage to go through the night so was discharged in the morning.
I developed a blood clot in my leg and 2 of my stitches got infected because they told me i had dissolveable stitches when i didn't. Obviously this doesn't happen to everyone, i was just unfortunate.
Pain wise i was only taking paracetamol and ibuprofen for a few days. I had 3 small incsions and then 1 bigger one. It felt very similar to after a c section to give you something to compare it to x
I feel like being on here had given me some great information to ask about and see if any are options for me because I was completely clueless and dumbfounded when they told me I had endo. But also realised I wasn’t crazy or imagining the symptoms.
Thank you I’ll ask about the pill as well. And I’m going to try go with the coil until I get my MRI and pray that things settle down. I think I’ve just been unlucky with the infection.
Ok that’s good to know because I recovered pretty quickly from my gall bladder removal and c section so that gives me comfort that if I do need surgery I CAN do it!
I truly hope you get some relief for your future and thanks again for the advice.
hi just wondered how your situation was doing now? Have you had your follow up yet? If so what are they saying about your care plan going forward?
I have a Dr appt later today so they can refer back to my gynae my symptoms bow but I know it’s going to be another few months before I see the gynae as I’m only just going into month 3 of this coil. Yes still holding onto mine and praying that one day I will get up and feel normal again with no pain 🤞
So i actually had my consultation yesterday at the hospital.
They want me to start zoladex while i wait for a hysterectomy. I also need another mri to check how much its affecting my bowels now.
I have put a post on this morning because i am really unsure if i want to start zoladex. The side effects are scary!
The pain for me now is basically non existent or maybe a bit of cramping now and again. Nothing like it was before. Im only spotting now and again also. Makes me even more unsure about the zoladex because this is the best ive felt since my last surgery.
I’m so pleased your pain has settled. I wonder whether you should stick with the coil if that’s the case? Why do they want you to have an hysterectomy if the symptoms have improved?im reluctant to have surgery so curious why they would do this.
Sadly my pain is horrendous, in fact worse than before I had the coil so GP is asking for gynae approval to start me on injections to put me into a menopausal state, I’m assuming this is what they are wanting to do with you?”whilst you wait the surgery?
I just can’t bear the pain so I’m willing to try anything. I’m wondering though if my situation would improve by just removing my cysts but I’m not due for my next MRI until May this year and the GP could see how much I am struggling and didn’t want to leave me another 3 months like this as it’s affecting my mobility.
I’m going to phone my gynae and ask to be put on the cancellation list for an appointment with her to discuss all this but I think my treatment will change before this.
I’ve asked for a copy of medical records as the GP was reading a letter, from gynae, to me that said I had advanced endo but no one has ever told or explained any of this to me.
So sorry to hear that your pain is worse than before. Its so awful having to live like that.Yeah the injections are what they want me to have. The consultant yesterday said that my cysts have got bigger again so having the injection would stop them getting even bigger.
They want to do the hysterectomy because everything is stuck together so would be more simple for them to take it all out. She also told me i have adenomyosis as well which means a hysterectomy would stop any pain from that.
Im not keen to have the surgery because its a massive step isnt it?
Do you think your gp could push for an mri or ultrasound sooner to check on the cysts for you? May is such a long time to wait.
I really hope a cancellation becomes available to you soon. Maybe your gp could put in an urgent request to help this?
Its awful how much we have to fight to be seen, i really have so much sympathy for you x
it is such a big decision but if we are so far off natural menopause what are we supposed to do. I feel more hopeful today that I have another option on the horizon.
Hopefully my next gynae appointment will come through soon and I can ask all the extra questions that the GP said I would have to discuss with them.
Did they indicate how long you might have to wait for your hysterectomy?
I truly hope you get some relief once it’s done as I totally agree with you it’s awful living like this.
so sorry for you! I can totally relate my mental health is pretty poor because of all of this and now I’m in medical menopause my hormones are all over the place as well. My only advice would be to do things that make you happy or give you some comfort. Sending hugs 🤗
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