What do I tell my doctor?😢

[Hooplove00]

Hi everyone!

I am 3 months post op, and have been on the pill back to back since my first period after op. I still have periods and this is my third. This period I couldn't fight anymore, and I went to the ER where they did an intravaginal ultrasound and found a cyst.

I bled for 5 days, stopped, and am bleeding again today. My cramps are still awful! Tramadol isn’t cutting it. Is this common? What do I tell my doctor? I don’t want them thinking I’m pain pill seeking 😒

Thank you so much!

[LupusMigraineetc]

I think you best discuss it with your surgeon, but I bled for 14 weeks post op, stopped for two weeks and started again for another 10 weeks. Eventually, I decided to stop taking the progesterone only pill because I realised I'd been bleeding way more since taking it when in the past it stopped me bleeding completely.

For me, that was the right decision and I've stayed off it. My period became regular and I now get my three weeks off. But my periods were so heavy when they came and hurt like hell, so I now take tranexamic acid for three days during and use a tens machine for pain relief. That is making it manageable for me.

Not sure how long post op you are, but it might just take time to settle. The pain is probably worse because you're still healing from the op internally and if that's your first major op potentially it's scarier for you so definitely seek advice from a specialist. Good luck!

[Hooplove00 in reply to LupusMigraineetc]

Thank you so much for your reply!

I am 3months post op, now . Was taken off the books at 6 weeks and told to get another referral if I wanted a hysterectomy. Were your periods terrible on the pill?

It’s my second major op in the past 3 years. I’ve been told the exact same thing from my GP as far as my body is still healing. Have interstitial cystitis and waiting for urology to call me.Yet when I went to the ER yesterday, I was totally dismissed( doctor walked out on me) and told to only come if it’s an emergency! The ultrasound made the pain and spasming worse. It’s frustrating because they said it’s going to take time, but when I go to the ER doctors treat me like I’m seeking opioids. I even told them that I didn’t want pills prescribed, just wanted to get my pain and cramping under control. I’m honestly pretty traumatized.

[LupusMigraineetc in reply to Hooplove00]

It feels like they take us off the books prematurely. I'm in the same boat, one year post op. It was my second major op in a similar time period to you. I had major open surgery to remove my gallbladder and reconstruct the bile duct at the end of October 2019 and then had the laparascopic surgery July 2022. My scar tissue is terrible and I still get really bad pain.

I have been suspected to have interstitial cystitis in the past too but they've never properly diagnosed it. I used to take trimathropen on repeat prescription, but I have lupus so shouldn't have been. Have to drink a lot of bi carb mixed with cranberry juice and have basically gone celibate to avoid getting worse symptoms. Have also had physio therapy for incontinence.

In terms of bleeding I was taking colestyremine for my bile acid malabsorbtion and when I stopped taking that the bleeding continued but was less heavy. Then when I stopped taking the pill the bleeding literally stopped completely the next day and I returned to a regular cycle. They were super heavy when I stopped though (a new night time pad was needed every two hours), but at least it was only for one week and the tranexamic acid has now reduced it to what is a near normal period but I still get debilitating pain the day before until day three.

It's just awful what we have to go through but it seems medical professionals are overwhelmed everywhere and only care if it's life threatening (sometimes not even then). Really hope you get help soon! Xxx

[Hooplove00 in reply to LupusMigraineetc]

that sounds so awful and I’m sorry that you had to go through all of that! It’s insane that there’s so many of us experiencing the same thing, yet nothing has changed. I have gone celibate as well. Even the ultrasound made things so much worse for me. I’m very nervous to stop taking the pill especially if I’m having the issues I’m having now. No one can seem to give me an answer or they tell me to ask my surgeon. I can’t ask my surgeon if they have already discharged me☹️.

I agree and it’s so wrong! Living like this is so depressing! All we want is help! Thank you so much. Hope you are doing okay!

Xx

[LupusMigraineetc in reply to Hooplove00]

All I can say is trust your gut! None of those specialists know what you need more than you do. I genuinely think most of them know less about our conditions than we do.

You could always trial coming off it for a couple months and see how you feel.

I hope some more people reply to give you more confidence in what to do, but in the end it's trial and error and each person may be different.

The pill should have helped regulate your bleeding though and it isn't by the sound of it. So if it's not helping the way it's supposed to, then I suspect there's limited damage to coming off it for a while and seeing what happens.

The depression is real. But I'm glad I found this site to know I'm not alone. Xxx

[LupusMigraineetc]

Also, I used tramadol for a long time and sometimes it didn't cut it. When pain was really bad I would ask for a diclofenac suppository and that was the one thing that helped even though it didn't help in tablet form. They don't like prescribing it for long, but if you haven't tried it maybe see if they'll let you have that for a while.

[Hooplove00 in reply to LupusMigraineetc]

l honestly think that that’s the discrepancy, is they have no idea what to do! This site has helped me so much and I’m glad I’m not alone. Think the plan is to stop after this packet, but not been given a for sure answer. I hope that I hear from more people as well, as I feel like it may boost my confidence in how I should be advocating. I’m using tramadol now, and that’s been helping until I have bad flares like yesterday!

Xx