Endometriosis- anyone had the same symptoms come back a few months after laparoscopy?

[Corinne0808]

Basically I just wondered if anyone could help...

After years of pain, constant back & forth to doctors with mis diagnosis, i finally had my first laparoscopy back in February and the gynaecologist found & removed endometriosis plus fitted me with mirena coil.

First couple of months after surgery I felt myself again and the pain wasn't as bad. Now 6 months on the pain is back again, along with all the symptoms before surgery and this has been constant for last couple of months.

I went back to my gynaecologist and doctor, both have said its not endometriosis, there is nothing they can do and told to go to pain management despite the fact my symptoms are the same.

Has anyone gone through this too? Should I get a second opinion?

Please help? Its really getting me down and I feels completely lost.

Sorry for long message everyone. Thanks

[Chon0619]

Yes I had surgery last October took me months to heal dr said she couldn’t get everything. I felt good for about 5 months then the symptoms came back horribly. My doctor said there was nothing she could do but put me on birth control and another surgery wasn’t an option. Being that I want another child I refused to except that answer. Saw a specialist who said I absolutely need another surgery. Had the surgery done July 17. Still healing and feeling pretty bummed that I’m stilll bloated. But hoping and praying it eventually subsides

[Corinne0808 in reply to Chon0619]

Oh wow so it was a good job you went and got a 2nd opinion then. Fingers crossed you heal and get better soon 🙏 xxx

[Anastasia17]

You could ask for an MRI scan with radiographer specialised in endo.

[Corinne0808 in reply to Anastasia17]

I had one last year but they said everything was normal which after having the laparoscopy it wasn't normal. Great thanks though its a good idea

[Giraffe92]

I would get a second opinion lovely, I had my surgery in March 2019 and symptoms were back within 6 months. I'm still waiting for an appointment with the specialist after my GP has told me to just "wait and see" if the pain goes away, even though it's 18 months post-surgery and my symptoms are worse than before. It's an up hill battle for sure!

[Corinne0808 in reply to Giraffe92]

yeah i think I should too. I keep putting it off because I'm worried it will come back normal and I will look like an idiot. I cant believe its been 18months for you sorry to hear that your symptoms are worse. I really hope you get sorted soon. I would keep pushing your GP or gynaecologist

[Giraffe92 in reply to Corinne0808]

I know what you mean, it's so daunting having to keep going back and say the same things over and over but it is worth it and fingers crossed you will get the support you need thanks lovely, I'm phoning my specialist direct on Monday because I'm fed up of being fobbed off by my GP. I'm hoping because I have seen him before I can go straight to him rather than wait for a GP referral but we'll see!

[Corinne0808 in reply to Giraffe92]

Yeah you are right it is daunting but it will be worth it in the end. Good luck to you hope you get somewhere with your specialist

[Love_Yellow]

I’m so sorry to hear you are going through this again, I had my first Lap in October 2019 and was diagnosed with endo, I was pain free till April this year and all my symptoms returned and worse. I searched for a specialist in endo and got a referral from my GP. Before meeting me i received a call asking me to go for an MRI. I had my appointment with the specialist on Thursday this week and he has confirmed that I’m needing another Lap as my bowel is attached to my uterus and there are other endo in places. Keep pushing and hopefully you will get there. Xx💛💪🏼

[Corinne0808 in reply to Love_Yellow]

Thank you yeah I have been wondering whether to look for someone who specialises in endometriosis. Sorry to hear you have been in lots of pain and need another laparoscopy. Fingers crossed it will help and they get all the endo for you 🙏 😊 xxx

[Linley]

So sorry you are in pain again, yes, Endo can come back again, so push for answers. BTW have you checked your coil has not slipped?

[Corinne0808 in reply to Linley]

yes when I went back to the gynaecologist she checked my coil and said it appears normal. As I was considering having it taken out first to see if this helps or not. Thanks 😊

[Lily1986]

Yes! I’m in exact same position as you. I’ve had four operations and my symptoms have returned each time within months.

The last surgery 2 years ago they inserted the mirena coil and when symptoms returned they initially said it wasn’t endometriosis and even if it was my surgeries have been so extensive the only option left is a hysterectomy.

I persisted as I know the symptoms of endometriosis and know my body better than anyone!

Since I’ve had my second chemical menopause which was horrific but did help with one element of pain.

Consultant has referred me to pain management for “nerve damage pain” But also said he was certain if he operated again he would find endometriosis, scar tissue and adhesions inside but stuck to the story that I could only have hysterectomy.

Already had both tubes and left ovary removed.

Mirena coil has helped reduced bleeding but done little else, I get all the same period symptoms. Or if it is helping with pain I’d dread to feel pain without it.

Best wishes to you xxx

[Lily1986 in reply to Lily1986]

Forgot to mention I did have an mri two weeks ago but still awaiting results. But he did say it was just routine to monitor remaining ovary, womb and see if there was anything really obvious causing constant pain in left side.

[Corinne0808 in reply to Lily1986]

Sorry to hear all the pain and surgeries you have gone through. I have only had 1 surgery so far, it must be so frustrating for you. Yes it's really annoying isn't it when they tell you it isn't endometriosis as it makes me feel like i must be going insane and I'm exaggerating the pain. Like you say i know my own body and I know its either still there or come back.

The mirena coil has stopped the bleeding mostly but all the symptoms are the same as before. The pain is mainly on left and sometimes the right too.

Thanks for your reply, its has helped. I will definitely get a second opinion with someone who specialises in endo.

Hope everything goes well for you and all the best 🙏😊

[Corinne0808]

Thank you everyone for all your comments its been really helpful. I will definitely get a second opinion 👍

[Simo7]

Second opinion from a BSGE specialist, excision seems to be the only real help for endometriosis but equally they still have to find it all for it to be helpful. I think I’m awaiting my 8th or 9th surgery (Lost count!) and I feel so disgusted that after 20 years nothing’s changed. Women are still questioning their bodies and their mental health and being fobbed off with hysterectomies. Wish you well xx

[Anastasia17 in reply to Simo7]

So very true!

[Zanaa]

Hi, I am having my laparoscopy this Monday. I have endometriosis and adenomyosis. While endometriosis can be removed without a hysterectomy, adenomyosis can't. The issue is that both diagnoses have the same symptoms. Also, apparently, endometriosis can grow back.

I can see me having similar issues one day as the consultant is not keen to perform a hysterectomy at the same time despite my consent. I personally feel that I can not cope much longer with the pain. You can have pelvic MRI and see what has changed since your procedure and maybe ask another doc for a second opinion. I am seeing a pain consultant for my back and although originally sceptical, he did help a lot with the pain management. Good luck