Endo pain returning. Worse than ever - Endometriosis UK

Endometriosis UK

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Endo pain returning. Worse than ever

FallenCas
FallenCas

Hello all! Brief history of my condition. Diagnosed in 2016 after attending a gynae for severe constant pelvic pain. Had a laparoscopy with Endo excised. Pain eased slightly but was still there as a dull ache all the time. Was then given Zoladex for 9 months. After finishing the course of Zoladex the pain went and my periods were virtually painless when they started again. At the time the gyane consultant told me to try having kids as that would be the only way to 'cure' endo (which I know isn't true).

Now 3 years on the pains have been getting worse each month. I dread a period coming, and today I sat crying because the pain was unbearable. Currently been off contraceptives since January due to trying to conceive this year with no luck.

I'm torn between going to the Dr's as I'm not sure what else can be done for me.

Does anyone know what the next steps might be for me? Would I be offered another laparoscopy? Would it just be stronger pain relief? Or any other options out there as this pain is becoming too much.

Thanks.

9 Replies
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Could it be worth getting something to control the pain and a referral back to gynea? Then if the medicine works or you fall preg in the mean time of the appointment you could cancel it if things improve? X

Yeah I think that's what I need to do. I'm taking co-codamol at the moment and normally that works but yesterday I just couldn't get anything to touch the pain

Hi. Firstly I am so sorry that this is happening to you. I’ve been in a similar position and it’s so frightening and traumatic. I am sending you so much love and strength right now.

Was the consultant who told you getting pregnant would cure the endo the doctor who operated on you? If so, I would 100% suggest getting a second opinion from a gynaecologist who has a more up to date understanding of endo, as it’s possible this doctor (or anyone under his team) isn’t a specialist and therefore isn’t experienced enough to properly treat and excise endo.

In any case, I would maybe try looking to see if there is a BSGE approved doctor in your area (they are the leading endometriosis specialists in the country) and writing to your GP requesting to be referred to them. The NICE guidelines specifies that patients have a right to be referred to any specialist of their choosing so your GP should do this for you.

Hopefully an endometriosis specialist will be able to figure out what is happening and offer you treatment options that give you relief.

Regarding pain management - it sounds like you’re really suffering right now so it would def be worth having a pain management review with your GP too. I don’t know if you’re on any perception medications but it sounds like a stronger painkiller is needed.

You can also asked to be referred to a pelvic pain specialist. The waiting lists on the NHS are long but it is worth it in the end.

I hope some of this helps!

FallenCas
FallenCas in reply to hannah11

Yeah the consultant who operated on me was the one who told me to try having kids. He was quite pushy about it too even though I told him at the time I wasn't ready to take that step.

I think there is a BSGE centre near me, I was never referred there though so maybe I'll have to speak to the GP and ask to be referred for more specialist advice. Thank you so much for the advice.

I have been presenting with very similar symptoms. I wish you success in your fight with pain. May i ask you about how your pain started? Was it building up gradually through years, or did you get really cold one day and then the pain appeared?

FallenCas
FallenCas in reply to Tarragon83

Initially before I was diagnosed I presented with a pelvic pain which wouldn't go away. It was constantly there regardless of my period or ovulation cycle. It gradually got worse and worse and after so many tests exploring loads of things they finally offered me a laparoscopy where they found the endo. After the hormone treatment and the pain vanished it was the same sort of thing again, just gradually building up to the pain. Yesterday though was quite frightening, that almost came out of the blue the pain was so unreal.

Tarragon83
Tarragon83 in reply to FallenCas

I see. I am 100% sure i had 3 episodes of pid MISSED by the doctors. I was extremely lucky to get clavulin the first time, for totally another reason, which stopped the pelvic pain then. I am clearly not responding to visanne, so now my new gp is thinking of adhesions. Lap seems to be the next step. It looks like gynos prescribe hormones when they are not sure of what is going on.

Check out the AIP diet - worked really well for me after struggling for years♥️💫

FallenCas
FallenCas in reply to Littlepeax

Thank you! I'll take a little look at that diet. I have seen there's an Endo diet too which maybe could help relieve the symptoms.

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