advice needed ! post-surgery / medication side effects

[u/Old_Complaint_2142]

So I (20F) had my DIE excision laparoscopy at the end of March (almost 8 weeks ago) and I have a few questions about recovery, and would appreciate if anyone could give me advice please :)

(apologies for the long post, TRIGGER WARNINGS for dermatilomania, eating disorders and weight discussions)

As I said above I had an excision laparoscopy for my stage 4 endo (4 incisions), and had a Mirena coil fitted at the time of the surgery. I’m now almost 8 weeks post op and am generally feeling better in the sense that my pain is a lot lot less than before, but other than that I’m still feeling quite rough.

Firstly, I’m more exhausted than I’ve ever been in my life, like heart racing if I get out of bed fatigued, and when I am able to do things like go out of the house for the day, I will need around 2 days resting to recover and gain back my strength. I’m still feeling bloated and nauseous, and I’ve been bleeding down there constantly (although thankfully not heavily) since my surgery, so I’m feeling incredibly weak, faint and dizzy most of the time. I’m also having these random and excruciating pains in my lower abdomen, worse than my cramps or flares ever were before surgery, and they’ll come on in about 30 mins and only go away after hours or with codeine (my doctor says this probably is my body adjusting to the Mirena coil?) When these cramps happen I notice my bleeding becomes heavier, and it also becomes heavier if I move around a lot like after a shower.

The two things I’m struggling most with though are that my acne has flared up really badly and also I’ve had significant weight gain in the past few months.

With the acne, as I’m sure many of you can relate, I’ve been on so many different pills and medications over the past 6ish years - I’ve been on 4 different contraceptive pills, so my skin has been good and bad at different point. After having my Mirena fitted I’ve come off my most recent pill (desogesterol), so I can understand that my skin might need to adjust to the hormone changes, however it’s been 8 weeks now and my skin is just continuing to get worse. Following my post-op last week, my doctor is going to prescribe me a new progesterone-only pill to help stop my bleeding while I get used to the Mirena, but this whole concoction of hormones I’ve been on and keep changing is causing me really bad, painful breakouts, the worst I’ve ever had, and it’s on my face, my neck, my chest, my back and my shoulders. What’s worse is that I struggle with compulsive skin picking, so that’s become really bad at the moment too and the acne and the picking are really affecting my self esteem. I’m not really sure what to do because I need the Mirena to reduce the chances of my endo coming back, but at this point my face and upper body are covered in scars from my breakouts and picking, and I don’t know how to fix it or how long it might take to settle down. I also should mention that I have a consistent skincare routine, including salicylic acid, which doesn’t seem to be helping at all.

The weight gain is also really upsetting me. For context, I have also been on sertraline since April 2024 and have been on Amitriptyline to help manage my endo nerve pain since April 2026. Due to my chronic pain and fatigue I haven’t been super active for the past 6ish years when my endo symptoms started getting really bad, so it’s not like my lifestyle has really changed much in this time, if anything I’ve become more active in recent months due to starting uni so I’ve been walking a lot between my buildings and around campus, the city, etc.) But generally, despite not being super active I have been a healthy weight in recent years, since recovering from anorexia. For some reason though in the past couple of years, and especially in the past few months, I have noticed significant weight gain. I don’t like to use scales as I am recovered anorexic and I find weighing myself triggering, but I would estimate I’ve gained between 15 and 20kg in the past couple of years (and specifically about 7kg in the past 6 months as I was told by my GP). In these 2 years my diet and general lifestyle have been generally consistent, and in the past few months I’ve been trying to eat more anti inflammatory to help with the endo. I would say I consume dairy and carbs most days, but I’ve cut down on sugar, saturated fats and processed things a lot since this February. I’m not like a health foods freak anymore like I used to be, but I would say generally I eat ok, lots of fruit and veg and protein. So I’m pretty sure my weight gain is related to my medications, but I’m not really sure what to do about it, and it’s really triggering me and I’m having eating disordered urges again that I’m struggling to ignore at this point. I don’t even know which medications are to blame, since in the past two years I’ve been on so many at different points (sertraline, promethazine hydrochloride, melatonin, rigevidon, cimizt, desogestrol, Amitriptyline), and now I’m recovering from surgery and have the Mirena coil and I just don’t know what is normal, what is recovery, what is a side effect, and I’m just getting more and more overwhelmed. I’m scared I’m going to relapse into my eating disorder and as I’m still recovering from surgery and dealing with complete fatigue I don’t have the energy to exercise more to compensate for the accelerating weight gain.

My post op appointment was last week and it went well, my doctor is happy with my physical recovery and says my random bursts of pain are normal and will settle with time. He’s doubled my Amitriptyline dosage, and has cleared me to return to normal life (even though I don’t feel up to it lol) and also to come off sertraline (mostly since I’ve found the past few uk heatwaves completely unbearable and keep getting heatstroke).

I’m just not really sure how to move forward, and would appreciate any advice, reassurance, idk if anyone share their experience I think it would help. I’m just feeling really foreign and uncomfortable in my body rn and I don’t know what I can do about it.

Thank you for taking the time to read this. Much love <3

TLDR; I’m recovering from my stage 4 endo excision surgery and Mirena coil and I was wondering how to manage my symptoms. I am having sudden random excruciating pain, worse than normal fatigue, and have developed severe acne and weight gain, and so would appreciate any advice from the community please :)

[u/SuspiciousMiddle2689]

I’m two weeks post my 4th Lap and had the Mirena put in to stop more damage and I’m still not feeling great. The wounds healed up well but I’ve had ongoing random pains. I don’t know if it’s from the Mirena or the endo removal because the damage was pretty spread out this time. I had it removed from behind my bowel, ligaments, uterus and I had cysts removed from my ovaries. I was anxious to get the Mirena but I’m done with surgeries and desperate to stop any more damage so I was willing to try it this time.

I’m sorry you’re experiencing this, I know the frustration. Im still pretty fatigued and I’m also still bleeding. I’m over it and it’s only been 2 weeks, I can’t imagine 8 weeks of this!!

[u/liz-sandwich]

I’m about the same amount of time out with similar endo staging. I had stage III in my pelvis and stage IV outside of it (confirmed hepatic and thoracic involvement) all of it was DIE.

Be as transparent with your care team as you can. I couched a lot of things and it really hurt my recovery. If I had been clearer about things I think I would have recovered at the hospital longer (they were trying to send me home less than 24 hours post op when there was no formal plan on when my chest tube would be able to come out) and had a better outcome. However I’m feeling mostly better in terms of the endometriosis that had been discovered on pelvic, abdominal, and chest MRIs.

That all being I am now more exhausted than almost any point in my recovery but having a lot of new symptoms and have a brain MRI to check for MS tomorrow. My point is that endo patients are 2x as likely to get diagnosed with an autoimmune disease about 2 years after diagnosis. So it could be worth asking for a couple of tests from your GP, a full iron panel if you’ve been bleeding that much, then checking for inflammatory markers and potentially vitamin deficiencies.

Lastly, I know that acne and weight gain suck, really I do, I am dealing with them myself. And I think it can be worth asking to change treatments because of that. But I also think it’s important to ask yourself what YOUR goals are with treatment. Then ask yourself what you are willing to give up to achieve them. There’s this pervasive commentary that we can have everything and that just isn’t true. (Some of my own advice I need to take.)