Advise please. I had a lap back in September which confirmed endometriosis, small dermoid cyst in right ovary and Endometrioma cyst in left ovary measuring 4.5cm. I have been on the continuous pill (skipping periods) since October hoping it would help with pain and shrink larger cyst , but it hasn’t worked. My consultant has advised to come off the pill and next step is to try hormone injections. I’ve read all the reviews of the side effects of the injection and really don’t to want to take this option. Are there any options available? And would would be the next steps if I didn’t choose the hormone injection?
Many thanks in advance.
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Beth84
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The only other step would be to have it removed via a lap. My cyst is 8.5cm and the pain is awful..... it’s just horrid but I’m hopin I will get a date for my op to remove it soon x
The surgeon who did your lap, are they general gynae and if so, do you know if they have a specialist interest in endo?
Were you told specifically where the endo is?
And were you given an idea of severity or stage?
These are quite important things to know when figuring out what your options are.
From what you've said, it sounds like your lap was diagnostic only? Nothing was removed or excised?
All the pill will do at best is reduce symptoms, which has obviously not happened for you.
Zoladex might reduce the cyst and give you some improvement in symptoms but it's only going to be temporary. You can only take zoladex for a short time (6 months recommended max). Have you been told what the plan would be for after this? Is there a longer term plan?
This is kind of similar to where I was back in Aug. I have a bit of a complex case but I have a large cyst that is causing me a lot of back pain & fatigue. I was offered zoladex by general gynae because I was told surgery would be too complex and would run a high risk of hysterectomy (in my case) so I wasn't even given this as an option. This is when I looked into things more and got access to my notes and got more advice. I ended up writing a letter of complaint to the endo specialist service, who have since taken me on and I've agreed to a treatment plan. I've started on decapeptyl (just like zoladex, it's just a different brand but the needle is significantly smaller - zoladex needle is massive!) for 3 months to try shrink everything (I've also got fibroids and a bizarre mass that they're concerned about). If they shrink, they hope that surgery will be easier & less risky. The plan is for the cyst, mass and possibly fibroids removed and any endo excised. I personally was happy to take the decapeptyl in this situation because its for easier surgery but I want willing to take it for temporary relief. These medications are called GnHR inhibitors and they're pretty serious medications.
I've been on it 3.5 weeks and it's been very difficult. I felt like I had flu for the first 10 days (it's possible I did actually have the flu though!) and I've had a really tough time with fatigue and headaches. Fatigue is usually my worst symptom, it's just been a lot worse. I don't usually have headaches though and they've been really bad. I've also had a lot of sinus issues, which can be a symptom, as well as the hot flushes and night sweats, though these really don't bother me that much, especially as its been so cold!
If you want, I can message you with a link to the place I got a lot of help and advice. They have a lot of of invaluable info.
I hope this helps. Feel free to ask me any questions.
Thank you for taking the time to reply to me. And yes please for the info link 😀.
My consultant is a general gyne and specialises in ovarian cancer. I see him privately. Basically I ended up in a&e back in April last year with severe pain, where they found one of the cysts, so the referral to my consultant was originally through nhs on suspected cancer (thankful all tests came back clear) but I have continued to see him as he knows what’s been going on since April and Endo wasn’t suspected until after mri.
The lap I had was purely diagnosed, but he did zap the Endo he found, which was only found on my left ovary (same one as larger Endometrioma cyst). The lap showed My Endometrioma cyst has leaked and has old blood on the outside of ovary (could have been the reason for my a&e trip). The consultant didn’t say a stage or severity of the Endo just that there was a small amount on left ovary.
My consultant said on weds, as the pill isn’t working the next step is hormone injections. I didn’t really ask a lot of questions then (probably should of) I go back to him in a couple of weeks, as Im waiting for my period to finish. He didn’t mention what injection, I’m guessing that will be discussed at next meeting, but I don’t want to go on any hormone injections to be honest and will tell him this. He hasn’t mentioned next step after injections or long term plan. He has already mentioned hysterectomy in previous meetings and even before my lap was done.
I just don’t know what to do next. My pains arent too bad most days, just days before during and after period are quite bad, I have bloating most days and sharp pelvic pains (which only last seconds) and fatigue. My periods aren’t heavy either. I would like to wait and see how long I can take the pain, as I really don’t want to mess around with my hormones anymore. My consultant did say if the larger cyst Carey’s in growing, it’s possible for it to rupture or twist the ovary if it gets large enough. I’m guessing having the cyst removed is a possibility but not sure if I can just jump to that step.
Sorry to waffle on and thanks again for your reply xx
This makes me so angry, I don't feel like the consultant is giving you correct information. The pill has no chance of shrinking the cyst. Basically endometriomas grow when the womb cells forming them shed period blood into the sack. There is no where for the blood to go so it just builds up. Think of it like a balloon full of liquid. Every period adds liquid. If the pill stops your periods, it may slow the growth but it won't shrink it. The only way to shrink is to drain the liquid.
As someone said above, the menopause injections are not a long term treatment as longer than 6 months can cause bone weakness. Essentially as they put you in the menopause and stop your hormones, it calms all the endo down temporarily. I had them for 4 months to calm things down before my second surgery. It makes it much easier for the surgeon to operate.
They found my cyst when it was 7cm. They didn't give me any treatment for 3 months even though they knew it was growing at an alarming rate. After 3 months it was 12cm, I was in such problems that I had to have an emergency operation, which was so traumatic I had to have CBT to stop nightmares that continued for 18months.
Please don't make the mistake that I did and assume that because they are a dr they know everything. Endo is not well understood and the knowledge among general gynaecologists is patchy. For a disease where there is lots of knowledge, it doesn't matter which doctor you have. For a disease with little knowledge, you need someone with the most likelihood of knowing.
Thank you for your reply and rant away! Sorry you’ve been through a traumatic time with it all. There is a couple of Endo specialist consultants with 20 miles of me from your bsge link, so I will ask for a referral to one of these. Thank you for your help x
Your story sounds similar to mine. I had a diagnostic lap in October 2017 (where I had a large endometrioma on my left ovary drained) and my Consultant wanted to start me on Zoladex. I refused because I didn't know what it would do to me and he didn't want to take the time to tell me. After my follow up in November, I chose to go on the combined pill... It really didn't work for me. I ended up on Zoladex after Christmas after all - it really helped my symptoms but I know it's not for everyone. I had 5 injections and am now on the mini pill, which again seems to be keeping my symptoms under control. Good luck with whatever you decide x
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